7/25/08: Hernia, A-phib and overzealous doctors

Was in the hospital the past 2 days with Atrial Defibrulation (a-fib). This was a small complication from the hernia operation I had 2 weeks ago, which was an indirect result of the MS. I thinned out my blood, spent the night in the hospital, and my heart converted. Here's the story.

One of the problems with MS is dehydration and the associated constipation that can come with it. Neurogenic bladders and bowels can join forces to make sure you always have a struggle with the bathroom......here's how. You drink the recommended amount of fluids in a day (half the body weight in ounces....for me 120oz) and you keep the bowels moving. Trouble is you have to pee all the time, at the most inopportune times. Don't drink enough water and the pee is better controlled but the constipation picks up. Hard to win.

During the course of diagnosis of my MS, one of the test I had at Mayo Clinic was to eject a balloon catheter from my backside after a series of sensation tests. I had a sever deficiency in the ability to detect waste in my colon, which is why I had so many accidents. The signal just wasn't getting to my brain that I had poop in the chute (sorry.......it is what it is) and I'd go a few days without realizing it. Suddenly the body would go through the ejection process to prevent harm.

Well, in the course of trying to eject the catheter and occasionally straining on the days I didn't drink enough, I developed a hernia. I had it operated on last October 2007, but it came back and I had it surgically repaired a second time a couple weeks ago.

My heart normally beats around 60 or less at night (thanks to all the exercise), and during the surgery it was probably just as low. I figure I somehow managed to get a small pooling of blood in one of the atria, because the 3 or 4 days following surgery I couldn't seem to get my heart beating right. I was feeling my pulse all the time and it just wasn't beating regularly. Instead of a rythmic bass drum, it was like someone playing the piano out of time.

It subsided a little some after a few days and I swam last week taking it easy, but each time I got out of the pool, it just didn't feel right. The past few days I began to feel it worse, and also in my breathing, so I finally went into the ER on Wednesday night to see what was going on. Atrial Defibrulation. Kind of like a boat propellor cavitating in the water. My heart was fine, but it just wasn't getting a good pump of the blood. And it was only moving the blood around my body about 75% efficency.

I was admitted, loaded up on blood thinners and my heart converted to sinus (doctor talk for got normal) during the night. I spent yesterday doing stress tests and ultrasounds to make sure I didn't have any clots or other problems, and I was released all ok about 3:00 Thursday. I was in the pool again this morning and it was nice having a 100% heart instead of one pumping about 75%. Could just feel it was right.

A-fib is pretty common. 2 million people in the country have had it, and some can't shake it. 3 people in the ER had it the same time I was there. It is usually caused by some type of disruption in the pump side of the heart or a disruption on the electrical side. If left in that state, it can lead to a clot which can lead to a stroke or a heart attack.

And that's where the overzealous doctor comes in. During the ER portion of the ordeal, I was visited by a number of nurses and doctors. The nurses and ER doctors all said A-fib is common and usually no big deal especially for a person my age with no history or family history of heart problems. They told me it should convert aywhere from 5 minutes to a few hours with the thinning of the blood, which ultimately it did.

The problems and stress level really started up when the cardiologist came to visit. He wanted to get right to business with a tube into my heart to check for clogs,then shock my heart back into rythym, followed by a cardiac ablation. Yeah right. Straight to a surgery to fuse up some of the tissue in my heart that is causing the short circuit. No regard to my history, level of activity, normal heart rate, lack of family history, nothing. Straight to the knife.

Needless to say, Kathy and I thought about the information we got from all ths people who visited. We decided if I was in the hospital under constant monitoring, the best thing to do was wait it out and see if it converts and do the non-invasive tests to make sure there were no clots. I can't even imagine how my quality of life would have been affected had I gone through an entirely invasive and unnecessary procedure.

The lesson here is to listen to the body and think. Get second opinions, talk to people. I don't believe any doctor intentionally wants to hurt someone, but I think they can sometimes get caught up in the moment and go too deep into their knowledge base instead of staying on the surface and dealing with what is before them. I'm a 42 year old guy with MS that is steadily improving. I have never had a single episode with my heart in the past, and have no family history of heart disease. The ONLY variable in the past 2 weeks when this all started was the surgery, which, even though it was a small surgery, does shock the body a little and can cause a few unwanted side effects.

I have learned to read the faces of the people who are examining you, especially the technicians who actually conduct the tests. They tell you they are not allowed to share results, but they aren't poker players. You can see them concentrating, studying, worrying, or talking to you like it's just a walk in the park. In this case the nurses were calm and cool, the ER doctors were easy going, and all the technicians on my stress and ultrasound tests were chatty. The only one who was worked up was the cardiologist. Maybe he was the one who was right since he was the one who has all the education, but in the grand scheme of it, I had time on my side and that was not a time to start cutting a perfectly healthy body open.

Obviously I am thankful for the medical community to take care of things like getting my heart beating right and being able to diagnose my MS. I'm also thankful to know that if for some reason my heart is out of whack and this happens again, there are some things I can do about it. But I also think it is so important to stay involved and ask questions. Sometimes something is really nothing.

Comments on my last post 7/19/08

I recently received an email from a good friend and fellow pilot, who is an attorney and has a biology degree. He requested that I not post his actual email, but indicated I had some flaws in my discussion on white blood cells digesting foods. Here is my clarification of that.

My form of MS is RRMS, (relapsing remitting), meaning the body gets an attack periodically which leaves a residual symptom manifestation or a new one. The disease then remits for a period of time (statistically 2 years but everyone is different) and the person adjusts to their new set of symptoms, then an attack happens adding new symptoms or worsening existing ones.
The 3 things a person is trying to do when treating MS is 1) address the symptoms themselves; 2) reduce inflammation; and 3) treat the disease itself.

For the symptoms and inflammation, this is where food choices have come in for me. The 5 inflammatory foods, caffeine, alcohol, sugar (refined), dairy (except eggs), and red meat are the areas to cut down to ease the symptoms. I have eliminated caffeine and consume about 5-10% of my former intake on the rest. All of my food choices are conscious decisions to make eating enjoyable and not starvation or deprivation related.

As for the disease itself, I had a choice to make. I don’t have prescription coverage on my medical insurance because I can afford any short term drug I need and I completely and totally believe any long term use of medication is negligent practice on the part of the medical industry. Long term use of synthetic drugs chemically alters body and the side effects simply lead to the next drug, the next side effect, and the next drug. My choice was to spend a million dollars over the next 50 or so years on a synthetic alteration of my body that statistically would provide me UP TO a 40% chance of reducing the number of attacks I have, or find another way.

The math is plain as day. 50 years left in my life with 2 years between attacks meant I was looking at somewhere around 25 attacks that will leave behind some residual symptom. After a 2-10 year of trial and error selection of the best drug for me, I would then inject the various medications and have a chance of reducing that number of attacks to 15. That was the best case scenario. Any way I sliced it, in my future I was looking at having to cope with the uncertainty and residual fallout of at least 15 more MS attacks – all for the privilege of spending a million dollars on it.

Because I don’t have rx coverage, I knew I was going to have to spend money on something. I decided to spend the time doing the research to see if there was a better way. The doctors don’t tell me anything because eating an apple is outside of the treatment protocol. I found, after some time and digging, that MS can be reversed. There are hundreds, possibly thousands, of people out there who have greatly reduced their symptoms and attacks naturally by restoring the body as close as possible to their original genetic makeup. Many claim to have completely reversed it. I found none who reversed the disease by use of drugs. In fact, most who are on the drugs spend their time going to support groups believing the industry has a fix right around the corner.

I realize in my last post I omitted steps in the process that take place in the body chemically during the digestion of food. I also realize you can’t see most diseases by looking through a dark field microscope (though I have heard you can see some forms of cancer as the red blood cells have kind of a pacman shape to them). But, you can see the quality of your blood cells. You can see over 20 different conditions that are readily visible in the blood that can lead to larger problems. Thrombocyte aggregation, Chlyous, Spicules, Yeast, Fungal forms, I-form bacteria, Rod form bacteria, Sugar Crystals, Uric Acid Crystals, Protein Linkage, Rouleau, Erythrocyte Aggregation, Anisocytosis, Ovalocytes, Target Cells, Hemolysis, Plaque, Acanthocytes, Ecinocytes, and so on. When things like these are present in the bloodstream and can be visually seen through a dark field microscope, there is a disruption somewhere.

I agree you can’t see the disease through this analysis, but you can see the factors that might lead to a disease and take active steps to ensure these well known, documented anomalies in the blood are addressed in order to reduce the likelihood of either contracting a disease, or in my case, worsening it.

I don’t say this lightly…….in my opinion, it’s nothing short of negligence on the part of the health care industry to not make something like this well known so people have yet another tool to take a more active role in their own health care. Everyone knows eating apples and taking a walk is better than eating donuts and watching football. But people don’t do it. The statistics are overwhelming……2/3 of the United States is overweight and 1/3 are obese. 20% of kids still in their teens at risk for heart disease. Why? Because stock prices need increased sales to keep up, and food companies market taste and portion sizes over nutrition. They also manipulate the nutrition labels to maximize revenues and profits while selling marginally nutritional foods that digest poorly in a body that was designed a thousand years ago to exist on things readily available in nature.

If people saw their own blood and saw with their owns eyes all the crap that’s in there, in real time, for example saw a high presence of Hemolysis, they might take the time to ask themselves why their red blood cells are dying - and do something about it. Will every single person avoid a blood-borne illness as a result? Of course not. But are the odds better in that person’s favor?

Bottom line: we live in a “doctor, my stomach hurts fix me with a pill” society full of refined sugars manufactured into every imaginable way to consume it. This is the WORST possible combination and people get sick. The numbers clearly show we’re getting sicker too. I was one of genetically unlucky ones who got hurt by the consumption of highly refined and inflammatory foods, so instead of crying about it and looking to the doctor to give me a pill (or an injection), I made a decision to do something about it.

The body is an amazing blend of science and creation. Nobody knows what predisposes someone to MS anymore than they know what causes it to become active. But we do know one thing for certain………consuming the foods our bodies were designed to consume and exercising ensures the chemical balance in our bodies is the absolute best it can be. The rest is up to our body’s chemistry, the cells, and perhaps God.

Personally, if there’s anything I can do to continue improving the quality of my life, I’ll do it. And if that means screening my blood periodically as another check and balance to promote my overall good health, I’ll gladly do it.

July 2008.....a significant improvement

7/18/08 The progress is slow as all neurological things are, so I tend to not update things every day when there isn’t much noticeable change. But something happened last night and I think it’s a step again in the right direction.

Some background first……I’m continuing to juice daily and take enzymes to keep the digestion process working properly to keep my blood clean. What does that mean? And what is the difference of enzymes and eating healthy foods? Big difference. To greatly simplify it, my friend and mentor in my quest to rid myself of this disease, Tom, explained this to me. The white blood cells exist to fight virus and infection by attacking foreign stuff in the blood. When food particles make it into the bloodstream as a result of improper digestion, the white blood cells have to finish off the digestion process to clean the blood out. This reduces the cells’ ability to fight infection, and when that work of the white cells is overloaded, it leads to sickness, flu, colds, etc., and for some of us unlucky ones, more serious disease. Pretty much every adult onset disease has this root cause in common. In short, if the white cells are chomping food, they’re not chomping disease. Sorry for the crude explanation. I’m not a doctor or a scientist and I don’t know how to put “ology” or “it is” after all my words to explain it the “proper” way.

Still with me?

OK, Tom did a screening of my blood recently. It’s a simple and painless process. Take a single tiny drop of blood from the end of your finger, put it on a slide and look at it under a superduper high powered microscope with a dark field lens that allows you to see. Attach a camera to the microscope and enjoy the viewing of your blood from a comfy chair on a nice high resolution flat screen TV. Make a DVD of the screen results and stick in your files to refer to later. You will see some amazing things when you screen your blood and look at your blood cells in a way you never knew about. You see the red cells at the size of a grapefruit. Anyone can see, without any question, what is going on with the blood in an easy to understand way. Not a bad investment of $90 bucks.

My blood was pretty clean this time, but not perfect. I had a few cholesterol crystals and a few berry cells meaning some of my white cells were working on that instead of the disease. Talk to Tom…….I can’t explain it.

Anyway, on to the thing that happened. As most who know me know, my legs have been affected by the MS. My pelvic area of the legs is numb while the feet are hypersensitive, especially the tops. They twitch and wiggle funny. Tough to explain, I know, but bear with me. Last night, I was laying on the couch semi-dozing off when suddenly I felt a big surge in the top of my left leg. Almost felt like someone put a positive terminal on the knee, a negative terminal in the nook where the leg hooks on, hooked it up to a power source, and hit the on button. It didn’t hurt; it just felt like something got plugged in. Didn’t think much of it, and eventually went to bed.

This morning I woke up to go swimming at 5 as usual, went up to my office to get something, and popped back downstairs and ran out the door. Driving to the pool I realized I ran up the stairs like a normal person, not someone who has really stiff legs - especially in the morning. Seemed like a small thing at the time, but when I swam, I was able to kick better than I have been able to in awhile. Walking out of the pool to my car felt different. And as I juiced and ate breakfast, the tops of my legs (quads) felt like they had been worked in a way I haven’t felt in a long time. I told Kathy it felt like I had gone running and my legs were tired from the run, not weak from the way my legs have been acting.

I had a meeting this morning right after I read to the kids at the school. In the meeting I sat down for an hour or so. Usually this makes my legs a little tight and I have to get up using my hands or leaning way forward or something. I sat up, put my legs right under me, and pressed straight up. They felt stable, strong, almost normal. For good measure I stood up and sat down 3 more times. I couldn’t believe it. I walked to my truck and came home. My driveway is sloped a little and often when I swim or work my legs on a walk or something, I scuff my feet a little up the driveway. Lifted them up easily. Tying my shoes has been a hassle sometimes so I grab the back of my leg with my hands and fling it up on a tire or a chair. Today the leg went up by itself.

Will it last? We’ll see. Living with something like this is a hassle, but you really do get to know twitches and flickers, and what has become the new “normal,” and this is different. I also have consumed about 80 oz of water so far (at noon), had a juice today as well, and I haven’t gone to the bathroom since I got out of the shower at 8:00.

May 2008......symptoms subsiding

Diagnosed with MS in September, I was running between horrified and mad. I’ve been through the “why me’s” and the “it’s not fair’s.” We made a conscious decision to avoid the pharmaceutical approach, and while I can’t say it was easy or without setback, going at this from an all natural approach seems to be working.

Don’t get the idea that I’m over it yet, not by a long shot. But I can safely say I am a lot better, perhaps as much as 40-50% better, which is not something most MS people can say.

MS is disease that mimics old age in many ways. Typical “male” symptoms show up earlier which has certainly been the case for me, and perhaps more frightening is the loss of motor coordination in my legs. As someone who was athletic growing up, this has been the toughest challenge for me. Well, that and peeing myself on a United flight shortly after takeoff from San Antonio to home. Hmmmm, the aroma of that cabin was something the other passengers will likely not forget.

Anyway, I started juicing back in November, I already swam a lot and kept that going, and I added taking a lot of supplements to make sure my body is getting all the nutrients it is supposed to get. Perhaps most importantly, I consume enzymes to aid in the digestion of food, something that seems to be at the root of many, if not all, adult onset diseases.

After I get back from swimming in the AM, Kathy and I have a glass of Jack La Lanne (Costco) juiced fruit every morning along with some high fiber cereal. The juice is usually a combination of whatever we have in the house out of oranges, grapes, berries (black blue, straw etc.) plums, bananas, mangos, grapefruit, nectarine, peach, etc. I have a water poached egg on whole wheat toast, no jams, butter, etc. It’s a total of about 500-600 calories, it’s high density, lots of fiber, and fills me up until 1:30 or 2. Lunch is usually baja fresh or panda express if I’m out or soup, crackers, and the like if I’m home. Dinner is whatever tasty light dish that Kathy comes up with, and there’s usually a lot of salads, shrimp, fish, etc.

I have greatly reduced or eliminated the inflammatory foods of alcohol, sugar, caffeine, dairy (except eggs) and red meat. One burger here and there, small amounts of milk on the cereal, binge on the sugar sometimes if it is in the house (usually only when we have guests), and I lose it now and again and stuff a pizza down. Overall, I’d say my diet is 90% plus different than it used to be. The sugar and caffeine is what really intensified my condition.

I drink 100-120 oz of water a day, about half of which is by noon. Not a drop of caffeine in months (except by accident, such as when I steal some of Jake’s root beer at a restaurant). I have tried to go cold turkey on the alcohol, but that is so unpractical. I have learned to drink rum and water so I get a little splash of rum and also stay hydrated. Took a little getting used to, but it is manageable. I lose it here and there and have a few beers, but always have limited it to 3 and only light beer. No yeasty darks anymore, cause they get me too.

Swimming is usually 4 times a week except when I have business meetings, school functions, or every once in awhile when I just struggle to get out of bed, which sometimes happens when there’s little setbacks or other challenges.

Again, one of the big keys I think has been the use of enzymes. My stomach feels bloated when I don’t use them and when I do, they help break down the foods and get them eliminated much quicker. That way food doesn’t rot in the gut, the blood is cleaner, and the white blood cells can spend all their effort on keeping the immune system strong.

I’m right at 6 months of doing this now. Results? Well, no scientific tests like MRI or cat scan have been done yet, so all I can offer are the things I know and feel.
1) I have not fallen once since starting this. I was falling roughly once a month and my legs were giving out fairly often. My legs still buckle a little bit here and there, but no falls, not even when my legs get tired throwing batting practice to my little league team.
2) I’m sleeping through the night most nights now (6 out of 7) and not having to get up to go to the bathroom. At my worst, I was waking up 5-6 times a night and was exhausted all the time.
3) I am able to go between 2 and 3 hours fairly regularly between bathroom visits, whereas I was down to about 30-45 minutes.
4) My bathroom emergencies have gone from 20-30 a day down to 2 or 3, and some days none. My highest duration in a long long time was just the other night when we went out to a night club. I went to the bathroom at 7:30pm, and didn’t go again until 1am. 5 ½ hours for me is like an eternity! Not many people time how long they go between going, but when it’s as much a part of your life as it is for me, believe me, you pay attention…..
5) Sorry to be graphic on this one, but about half the time I can feel when I have a poop in the chute and get rid of that naturally. When I had that test done down at the Mayo clinic last August, I literally had no sensation in there, which is why I had a bunch of accidents.
6) My eyesight has improved, and I think this is mostly because the eyes are better hydrated. I was going through a bottle of eye drops a week and had documented chronic dry eyes. As I write this I have a bottle of eye drops in front of my computer that I haven’t touched in 4 months. I just don’t need them as the eyes are hydrated and I think this is why my vision is a little crisper.
7) No other part of my body has come into play. No pain, no numbness in the arms, no twitches, no loss of anything new. Whew…..

Obviously I have to keep at this on a day to day basis. There’s no guarantees in any of this, but so far, I have avoided succumbing to the interferon medications that I didn’t want to take. I’d love to say I haven’t had ANY alcohol, ANY red meat, ANY refined sugar, etc. but the reality is staying away from it 100% is just plain silly and I think the key to making this or anything else work is not trying to be perfect. Our bodies are smart and they know how to get the nutrients they want out of food and dump the rest. My job is to make an effort at the cellular level to give the body the best chance it possibly has by feeding it the stuff it really wants.

Hopefully I can report in 6 more months that this bs disease will be gone completely.

February 2008, a setback

I had to go to San Antonio in February to excavate and replace a 180 foot sewer line for a 10 unit apartment building we own there. My crew was in Texas at the time working on other properties, so it seemed a good time to go and get this done. The plumber I had hired to do this for me seemed to be in a little over his head.

I spent about 12 days or so in San Antonio on the project. I stayed with my crew in one of our other properties, and I took them out to Dinner every night at Hooters on San Pedro. Not sure why every night, but when you're that tired, decisions are tougher.

Breakfasts were my standard Jack in the Box Meaty Breakfast Burrito with Orange Juice and the arsenal of supplements. Lunch was usually a box lunch from a Mexican restaurant, and dinner was a salad at Hooters.

As the week progressed, I began feeling very confident in my healing. I was having fewer bathroom episodes, my legs felt stronger, and it seemed to be just a matter of time before I kicked the MS out the door. I dropped my guard.

At Hooters each night, I bought the crew a few beers and drank a local dark beer or two. Though I continued to consume the enzymes, my food choices for the 2 week period weren't the best. I started having accidents in bed again, had to pee constantly when I was on the tractor digging the sewer line, and the worst episode was coming home.

I said goodbye to my guys as they dropped me at the San Antonio airport. I did the normal ticket and secuity routine and headed for the airport bar for a beer. I felt I deserved it after a job well done and all my improvement in the symptoms. I had 2 dark beers at the airport, but in an abumdance of caution, went to the bathroom to empty out before I board the plane.

I sat about 15 rows from the rear where the bathroom was. People loaded their bags in the overhead and I sat there feeling good about returning home to see the family. I felt fine.

The doors closed and everyone was seated for departure. The plane pushed back from the gate, when suddenly I felt the slightest tingling urge to pee. I thought I was good, after all, I've been reducing the symptoms. I'm good.

The plane comes to rest at the runway entrance. My urge to go gets a little stronger. Nobody was sitting in the seat immediately next to me, but the people across the row in the 4 seat wide aircraft could see I was struggling.

We start the takeoff roll, and I feel myself having to pee as bad as any urge I've had. I put my hand on my jeans and pinched as hard as I could to stop it. The plane gains speed and leaves the ground as I lose control completely. In seconds urine was running down my legs and jeans, so I ran to the bathroom as quickly as I could despite the flight attendants' request to sit down.

The climb to 35,000 feet wasn't all that fun. I sat in the bathroom of a crammed airliner with my jeans down, trying to mop up whatever I could with the paper towels. My underwear was soaked like I had been swimming. Even my shoes were a little wet.

After some 20 minutes in the bathroom I returned to my seat. The cabin was dark so the pee stains didn't feel like they had a spotlight on them, but I was still damp in airline-water-diluted urine.

A flight attendant came by with several more paper towels and silently offered them to me, then opened the plastic garbage back to trade for the wet ones I was using to dab myself with.

Two and a half hours later we landed in LAX for my transfer to Las Vegas. Though still damp, I was at least able to walk off the plane without advertising to the world I had just spent the last portion of my life bathing in my own urine on an aircraft seat.

I eventually made it home and spent the next few days sleeping with a bed pad, dealing with a horrible increase in symptoms. I wondered if all the effort I spent in juicing and these supplements were doing anything. I thought about going back to Mayo and getting the injections started. I thought about a lot of things, not many of which were healthy.

I got back on the juice the next day, stopped drinking, and got back on the regimen that had been working. Within a few days things improved, but the presence of a rather severe Unrinary Tract Infection made it almost impossible to stop.

I tried a course of Colloidal Silver to use as a natural antibiotic, but it didn't work. My bladder infection was too strong. My urine was so cloudy and it stunk to high heaven.....or maybe a dead mule festering on a deserted highway in an Arizona summer. I had to finally go to the Urologist and get the cultures done. Turns out I had an E Coli infection which was causing the cloudy and foul smelling urine. I finally gave in to the urologist and took a week's worth of targeted antibiotics to knock out the E Coli.

I learned a valuable lesson in this.......the inflammatory foods stay inflammatory. Drinking dark beers for a week inflamed my condition.

January 2008, making some progress

I wanted to let you know some updates on how things have been for me. I think I told you I was going to address my MS naturally instead of going the pharmaceutical route. I got my "official" letter from Mayo Clinic a few weeks back with all my tests, reports and diagnosis, and as I read through it I can't believe that was me. The doctor's reports and tests are all so much a part of me because I know I went through them, but who I am now, these reports just seem like they were written for someone else.

Since detoxing by juicing and taking the enzymes and other vitamins etc., plus eliminating caffeine, reducing sugar and alcohol and other inflammatory foods like red meat and dairy, I think I have the picture sorted out. And it's paying off.

As you know, MS people have 3 things to address:
1) The disease itself
2) Inflammation
3) Symptoms showing up from the MS

1) The MS itself is leaving me and I can tell by the symptoms beginning to reduce. Obviously I'll have to wait a year to prove that, but that's ok.
It's exciting for now to just feel it just going away little by little.

2) My inflammation is next to nothing. Getting rid of foods and drink that causes inflammation is the #1 thing I did. I absolutely stopped drinking coffee and believe it or not, I have more energy now as a result of juicing instead. I always wanted to sit in front of the TV by
5 or 6pm because I was tired, and I'm up now like a normal person. I also have reduced my chronic dry eyes to where I seldom use eye drops (I was using them all day long). This is a huge indicator that my body, which was retaining water yet was dehydrated, is now better absorbing and accepting water.

3) As for the symptoms, I have reduced my bathroom emergencies from 20 a day to around 3 or 4. I sleep through the night now about 3 or 4 days a week instead of waking up 3 or 4 times to pee. I haven't fallen in a couple of months, my legs are only a little stiff in the morning or if I sit in a chair too long, and I actually had to run for a plane a few weeks ago. It wasn't until I was in the thing that I realized I was almost coordinated again. As for my backside, I can actually feel that I have to move a bowel about once or twice a week now, instead of having no clue (this was one of my larger symptoms that led to a lot of lousy accidents). These are clear pieces of evidence that the symptoms are subsiding. My urine is cloudy and horrible smelling from the ongoing detox and my bowel waste is very dark, which are also indicators of parasites and toxins leaving.

I am back to the pool now the holidays are over (it was closed for a couple weeks). I worked out at the gym in my house a few times during the break, but not as hard as I swim. I swam today and I feel strong and in shape, but I was a little slower than usual. No problem, though...I'll pick it up.

November 2007: Results of the first Detox

Happy Thanksgiving and how you doing in all one swoop. Thought I'd also let you know what's been happening with me.

I've been good actually, with the exception of the past couple of weeks.

I was "officially" diagnosed with MS back on September 28, but I have been suspecting that was the problem since about March or April, and I've had my symptoms for about 3 years now.

Early this year, still not knowing what was wrong with me, going nuts, being incredibly overweight, and thinking that some radical surgery might be in my future, I began swimming at the Desert Breeze Pool (Durango and Spring Mountain). The goal was to get into the best shape I could so that I could recover from whatever surgery was coming my way.

Turns out I didn't need a surgery, and that I indeed had the MS. I ended up losing 65 pounds or thereabouts, and I'm now just below 250. I had played baseball at this weight, so this is pretty much where I belong. I'll probably lose a few more pounds over the next few months as I sculpt my body a little more. Yes, we still get to do that.

Anyway, part of my mission in life has been to find out if the doctors are right that MS is a lifetime disease that eventually takes away most of your freedoms, or if it is even possible to reduce or even eliminate the disease. I set out to find out if it was possible, and if so, how. I began to research things, using the internet and the bookstore and talking to people, and soon it became obvious to me that MS CAN be reversed.

Let me say it again.......MS CAN BE REVERSED.

The only thing that can repair the human body is the body itself; more specifically the immune system. Medications only treat symptoms, but do not address the underlying cause of a disease. There is no medication on the face of the earth that cures a human of any disease. Only the immune system can cure a person of anything.

The process is to detoxify the body and remove the poisons from it, then build the immune system up to a point where your metabolic intake and conversion eventually sends the calories you consume to the disease itself.

This is done by improving the digestion of food so that we can actually use the nutrients we consume to regenerate our cellular structure and eliminate toxic waste. To improve digestion, it takes a blend of making and consuming fresh fruit and vegetable juices (store bought juice has been pasteurized), supplements, and a good digestive enzyme that will aid in the process of breaking the food down.

Imagine you eat 100 calories of food you have to chew, say a salad. Did you know that the average person spends 70 of those calories in digestion itself? We then have only 30 calories to pump our heart, fill our lungs, see, walk, talk, etc. Add in that people with MS we spend still more calories on the disease, more on the areas where the MS has come out (i.e.
inflammation in the legs, bladder, etc.). If you spend 70 of every 100 calories just in digesting the food, is there any wonder it is difficult to turn it around?

Just imagine if 10 or 20 calories went to digestion, then 30 to 50 went to heart, lungs and body function. You'd still have enough left to fight infection and disease. This is why so many of us can fight colds but not disease. We're simply not metabolically enabled to do it unless we make that change in ourselves. And we all can do it.

THE DETOX
I said above the process was to detox and digest. Add in supplements and exercise. I expect to be clear of my MS in 1-2 years. That said, there is a down side in the beginning. Anyone who has done a total body detox knows there are some major symptoms that come with it. Add MS to the mix, and you'll know why this comes with extra challenges. My MS symptoms include urinary and bowel issues and leg instability, among other things.

The detox symptoms have given me a headache (probably in part from caffeine withdrawal) like I have never before experienced, I have been running a fever of 103.5 degrees, and my urinary and bowel and leg reactions have been so bad that I haven't been able leave the house for almost 2 weeks. My legs felt like they were 300 pounds each and I couldn't get up the stairs.

The detox symptoms first came 2 Wednesdays ago and improved a little back and forth, but at times have been unbelievable. My head hurt so bad I thought I was going to have an aneurism. I had trouble walking, dressing, and had to have a bottle next to the couch because my urinary symptoms gave me 5 seconds warning which wasn't enough time to get to the bathroom.

But this is part of the process. I need to remove the poison from the cells and replace it with the nutrients I can use. And having MS, I have a lot of poison in all my organs, from my kidneys to my pancreas to my gall bladder to my liver. Once I get through this initial process, I'll be ok and on the road to recovering from the so called "life sentence" disease.

Nov 07. Juice & Enzymes: Here goes nothing

I got my juicer on Wednesday and began immediately. Today is Tuesday night, and despite being in Seattle over the weekend and in Williams, AZ yesterday and today, here's my juice and meal regimen so far:

Water intake: Goal is 125 oz/day (1/2 my lbs body weight in oz). 6 of 7 days I have consumed 125oz +/- of water in addition to the juice. Today was a little short, about 90-100oz.

Supplements intake: all 5 products I have taken without fail according to the packaging, morning noon and night. As I learn more about MS it appears I will need to up some of the dosages on some of them and add in some more things, like fish oil, more vitamin D, and more vitamin B12.

Meals and Juicing so far:
Wednesday am: Jack in the Box meaty burrito and decaf (note: this is the breakfast I had for quite some time over the past year - approximately 40% of my breakfasts - as it has no sugar. I lost a lot of weight eating this and other sugarless meals).

Wed noon: I forget.....I think I didn't eat as I was quite busy that day. Bought the juicer mid day. Wed pm: 6 carrots, 2 apples, 2 celery stalks and 1/2 cup broccoli in the juicer. Made approximately 40oz.

Thursday am: 2 red apples, 1 granny smith, 1 orange, 1/2 cup cantaloupe, 3/4 cup purple seedless grapes. Yield approx 32 oz.

Thursday lunch: Whole foods, bought 2.5lbs of salad, tuna, chicken, you name it. I was afraid the juice wasn't going to be enough calories so I might have overdone this meal. I ended up eating roughly just under 2 lbs of the salad stuff at whole foods.

Thursday dinner: same as Wed.

Friday am: same as Thursday, added some cranberries

Friday noon: on the plane to Seattle, had crackers and peanuts. When we got to our cousins house at about 4pm, had cheese, wheat thins, canned albacore (full can and the crackers and cheese to go with it).

Friday pm: Found out our cousins in Seattle had an old juicer that doesn't work quite as well as mine, but did the job for temporary. Took it to dinner and made juice similar to the past 2 nights.

Sat am: fruit juice like all week, added some cranberries and grapefruit

Sat lunch: went to Ivars seafood in Edmonds. Had bowl of clam chowder and a walnut type salad with spinach and cheese, vinaigrette dressing.

Sat pm: this was the night of uncle Bob's funeral and there was no good food around. I ate crappy. I had some hot chocolate at the funeral first. At the wake, I had some pressed turkey from the catered buffet along with fresh fruit and vegetables and potatoes, but lost it at the cookie line. I think I had 6 or 8 oatmeal raisin cookies, and we then went out for drinks after, where I had 3 bloody mary's.

Sunday am: right back to the juice. this one was quite good as I took the fruits from the meal last night and juiced up all kinds of stuff.

Sunday noon: ate at Seattle airport on way home. Halibut, fries and clam chowder from Anderson's fish in the airport. The fish was very lightly tempura and really very good. Only had a handful of fries, and had about 16 oz of clam chowder.

Sunday pm: made up a 45 oz veggy mix at home.

Monday am: fruit juice, same as last week

Monday noon: we were going to the polar express in Williams, Az, so I had my vegetable juice at noon knowing I'd be eating in a mystery restaurant that night.

Monday pm: Below average buffet at Williams. Had cantaloupe, grapes and cherry tomatoes, but also had a bread roll, some turkey and potatoes. 1 plate, didn't overdo it, but the food wasn't what I'd call great - either in taste or nutrition.

Tuesday am: same restaurant had scrambled eggs (2), bacon (3), sausage (2), some orange juice, and similar fruit as last night.

Tuesday about 3:00 did a fruit juice mix at home

Tuesday pm about 7:30 did a veggie juice.

NOTES: Since juicing:
1) I have COMPLETELY lost my craving for coffee, either decaf or regular. Even when I smelled it in the room at the hotel when my mom had some I just didn't want it. Thought this was strange. The coffee maker is now put away and the juicer is out in its place.

2) Today my urine stinks like vegetables. I added some ginger root to the mix, not sure if that's it or if I didn't drink as much today. I wasn't able to drink as much during the day because I was flying back and I had to pee in the plane 3 times on a 1.5 hour flight as it was.

3) I have used plastic baggies with the dosed supplements and have taken them without missing any. Sometimes I feel like the pills haven't gone down very well and feels like a small lump in there. goes away fairly quick.

4) other than today, the urinary symptoms were mild. No bowel issues, minimal leg weakness. I would rate my symptoms overall as similar to when I was first getting the symptoms a couple of years ago and had no idea what I had. Today, urinary symptoms were tough to handle.

5) out of 21 meals in the past week, the plan is to juice 14 of them with 7 light lunches. I think I juiced 13 times out of 14 with 8 other meals. Of the other meals, 5 of 8 were reasonable.

6) I bought the Balch book "prescription for nutritional cures"

7) I have had several upper respiratory tract infections in the past 10 years. Bronchitis seems to be a recurring theme. I haven't been sick for about 3 years, but prior to that, I recall getting several "colds" about this time of year and being unable to shake them without eventually turning to the doctor and getting antibiotics because of the deep green colored mucus that gets trapped in there. This year I got it again, and I have been trying to use the juice and the supplements to knock it out. I had the standard green mucus as before, but this time it has changed color to white and light green on its own. I still have some residual cough, but so far I feel it's getting better and it seems to be a result of the juicing and supplements. If I am able to successfully eliminate the "cold", it will be the first time I can remember doing it without antibiotics. This will be a huge boost to the idea that I can do the same for my MS.

If not drugs, what's the fix?

HYPOTHESIS
The other day I was in the shower, again attempting to empty my bowels. I often don’t get to use the toilet for this because I get backed up and need the use of several fresh water enemas to get the waste out. I sometimes go 3 to 5 days without a discharge without the enemas. I have added a natural product called Super Cleanse which seems to be helping.

Anyway, I have begun to study my waste a little more than before and I have noticed it is always lumped up like horse pellets when I am constipated, and when I finally get it flowing, literally pounds come out. When this happens, the odor is unbearable and it is much more viscous. I thought to myself that because I am dehydrated yet retaining water (sounds like an oxymoron, but true), my cells are closed and not receptive to fully absorbing the water I drink, hence the urination problem. I also theorized that my body draws the moisture out of the waste and through the walls of the canal, and this leaching of the toxins, intended for elimination, back into the body becomes the catalyst for the disease itself.

MS is a demylination process caused by the body attacking the myelin sheath because it “thinks” it is a foreign substance with exactly the same DNA or genetic makeup as something it attacked in the past. The odds of some external virus causing this seem highly remote (perhaps in the billions) but the incidence of MS is 1 in about 700 people in the US. The odds don’t match up in my eyes.

However, if the body is drawing toxins in from the intestinal tract, that would seem to me the DNA matchup probability would be much higher. And if a person is susceptible to this disease, which I am, then that would seem the most logical place to correlate poor digestion to poor cellular function to dehydration/retention to the MS attack. I think it also might explain why when so many people get on a better diet they significantly reduce the number of attacks (or even eliminate them).

In the three years I have had symptoms, I only got a name for my problem in September 28th. Since eliminating coffee, exercising, taking enzymes, I have had all symptoms begin to minimize, except during periods of heavy detoxing. The only thing I am aware of that took place prior to 2004 when the symptoms began was from 2001 through last year, I developed a love affair with coffee. I used to drink a cup a month if that, but when I got my work deal in LA in 2001, for some reason I started drinking coffee like it was going out of style. I remember a lot of dehydration associated things, mostly fatigue related, and I know I didn’t drink anywhere near the water I should have. It was in this time period I got the heaviest I have ever been, lost all my will to exercise, and also began to get my symptoms.

Since getting off sugar and beginning exercising, I lost 70 pounds, but it has only been since consuming the enzymes and other metabolic supplements along with the juicing that I have noticed improvement in other areas.

How do I go about scientifically proving or disproving my hypothesis?


THE DECISION AND PROGRAM
I decided to go with a natural approach. Initially, no meals for breakfast or dinner, and eating a reasonable lunch like a salad with lots of meat. Slowly bring the solid foods back in when I start eating the legs off of chairs.

The key to this is making your body as ENZYME RICH as you can and totally DIGEST the food sources to get it absorbed into the bloodstream with all waste eliminated asap. Raw foods are enzyme rich, cooked food (including pasteurized food) are enzyme dead. Pasteurized Orange juice is enzyme dead, as is milk. Enzymes are the difference, not necessarily vitamins or the like. Focus on enzymes and digestion.

Also, reduce the inflammatory foods including red meat, alcohol, caffeine, refined sugar and dairy (except eggs)

Morning juice (20-30 oz) any combination of:
Oranges
Lemon
Grapefruit
Lime
Mango
Kimi
Pear
Plum
Honeydew
Canteloupe
Dark Grapes
Blueberries
Blackberries
Strawberries
Let's just say whatever you can find at the market........

Don’t juice bananas. If you want banana in there make the juice first then use a blender to mix in bananas.

Go easy on the lemons and grapefruits as the flavors will dominate the concoction and the acid is high. Otherwise, go whatever flavor. Peel all thick rinded fruits with a potato peeler, and wash the rest. My normal morning juice will be all the berries and grapes I can find, roughly 2 cups, 3 big oranges, ½ grapefruit, ½ small lemon, and honeydew and pear.

When reintroducing food, I add in water poached eggs on some turkey lunchmeat and Thomas wheat English muffins. Any whole grain bread is ok. Stay off the refined sugar breads.

Lunch: whatever. Just make a reasonably healthy food choice and consume digestive enzymes with it. No solid food past 2:00pm for awhile, then reintroduce solids.

Dinner: Vegetable juice consisting of
4 carrots
Apple (any kind, wash but don’t peel it) Beet (great for the liver) And whatever you can find of the following Celery Broccolli Ginger root Kale

Reintroduce solid food after a month or two eat healthy sensible food for dinner. Always take enzymes with all foods to help digest everything.

The enzymes and metabolic supplements I take are at http://www.enrichinggifts.com/ I take the metabolic complete, aloe, and sterolmax in addition to the enzymes. Runs about $200 a month, but I've found I don't actually spend much more on my food budget overall because many things have been eliminated.

October 1, 2007....Half Dome. MS go home

After learning I might have to live withMS for awhile, we decided to do something we've wanted to do for quite some time. We called our friend Steve in Honoulu and asked him to join us on a trip to the top of Half Dome in Yosemite National Park. Always up for adventure, Steve came and joined us.

I call to do something fun such as hike to the top of Half Dome, you may want to do your best to clear your schedule and come along. This was quite a thrill. The first part of the hike was the normal plodding along dirt trails and rocks, looking at trees and distant views. But when you arrive at Half Dome's base, it all changes.

Healthy people can make the trip in around 12 hours. My legs were pretty weak so we decided to do the trip with a guide and do it overnight. Being 6'5" and 255 lbs meant I was going to have to do this under my own power for the most part, and my wife wanted the extra help in case there was any carrying invvolved.

We made it to the top on the morning of the second day and what a view. It was here I decided once and for all that I was going to beat this thing.

Mike

September 28, 2007.....official diagnosis of MS

On Friday, 9/28/07 Kathy and I went to Phoenix for our "wrap up" visit to the Mayo clinic. The tests they ordered over the past few months were all in and the results had been tabulated. Seems they were able to find things on the various MRI's, CT scans, etc. that others could not. As it sits right now, I apparently have moved from the 90%+ category of having Multiple Sclerosis (MS) up to about 99.9%.

Why not 100%? I'll try to explain.

The evidence includes the symptoms and the way they developed, comparing my spinal fluid to the blood drawn the same day which showed the presence of oligoclonal bands, and reviewing the brain and cervical MRI's, plus the CT scan of the heart to rule out another possibility called sarcoidosis. But MS is a weird, catch-all type disease that affects people in different ways. For me, various pelvic things were affected. For others, pain, loss of vision, loss of mobility, loss of arm strength, is a reality.

From what I have learned, MS is a disease that attacks the Myelin sheath that covers and protects the nerves. It is like damaging the plastic coating over wires, causing short circuits and/or misdirected signals. And because we all have so many nerves inside us, the actual affected nerve in one person is not necessarily the affected nerve in another.

It is a disease of the central nervous system that affects about 1 person in 700-800 people. The disease itself tends to come and go throughout your life, but because it affects the nerves, each time it comes it leaves a set of symptoms behind that generally stay with you. The big problem is there is no way to predict when or where the disease will act up again or what symptom(s) you will end up with as a result. The other problem is the nerves are so small and so heavily bundled together that surgical repair is beyond today's technology. The statistics say these flare-ups (attacks) happen on average every 12-14 months, but many people go several years between. The only way you know when MS is attacking you is from a new or worsened symptom. And yep, that's the scary part.

MS is not considered life threatening and most people live as many years as they were going to get anyway. The real trick in dealing with MS mentally is to not blame everything bad that happens to you on it.

The Mayo clinic doc I now see believes (guesses) I have had two attacks, likely one about 2 1/2 to 3 years ago, and the second about 7-8 months ago. The first probably brought the symptoms I have on, and the second probably worsened them. Based on this highly limited statistical set and the evidence I currently have, I might be looking at an attack once every couple of years. So I can probably expect somewhere around 20 to 30 attacks in the next 50 years, each one leaving some type of scar that may worsen some symptoms and may create new ones.

So if this sounds like a bunch of maybe's and might-be's you're right. That's the trademark of MS; a whole bunch of maybe's. And the treatment is worse. There are six FDA approved medications for MS itself, plus the various treatments for the symptoms they leave behind. So far, I take no medication for anything. The MS medications reportedly MIGHT reduce the frequency and/or severity of an MS attack (again, we only know about the attack when a symptoms changes or is new) by up to 40%. It might do nothing. Picking which of the medications to use, if any, is a total crap shoot. There is no way to measure anything in my body and say I need X dose of Y drug. All they can do is try one (which are daily, weekly or monthly does, depending on the one you pick) and watch for the next few years to see if it did anything. Strangely enough, the pharmaceutical companies want to be paid for these "maybe" drugs while we see if they do anything, but there is no reimbursement program in place if it's the wrong one or if it causes adverse side effects.

So here we sit.......almost 3 years of all my really fun issues, $50,000 worth of medical testing at local doctor offices, University of Utah, UCLA and the Mayo Clinic, and I finally have a name but no cure, nor do I have a reasonably certain treatment option. MS is really an interesting disease in that everyone has heard of it but nobody really knows what it is or does, and I think my explanation above shows why. It's a diagnosis by exclusion, and is a difficult one for even MS doctors to arrive at for sure.

Most people I talk to really don't know what to say or do to offer sympathy for me or Kathy. So the best thing is to do nothing. I don't feel sorry for myself, so you shouldn't either. If we happen to be together and I have to go to the bathroom, you'll know why. And if down the road I add new things to my set of symptoms, you'll know why.

Mid 07: Mayo Clinic begins diagnosis

I spent the last week (June 2007) at the Mayo Clinic in Scottsdale/Phoenix, trying to figure out why my pelvic region has taken on some of the characteristics of a person twice my age.

The executive summary: It's a good news/bad news thing. I don't have cancer, it's still a mystery.

I arrived in Scottsdale last Tuesday night to begin the Mayo process Wednesday morning. I met with the main doctor assigned to me, gave him the run-down on the multitude of doctors I have seen, the tests I have been through, and the opinions I have received. Using a pretty sophisticated scheduling system, the doc clicked on all the tests he wanted to order and all the doctors he wanted me to see within the clinic. He gave me the once-over and then sent me to the scheduling department where they printed me out an itinerary resembling a college schedule. My follow up visit with him was to be today.

I then began the poke and prod process. In the past week, I got an ECG to check my heart, an EMG to check nerve conductivity (and inflict severe pain), chest X-rays, a blood pressure monitor for 24 hours straight, an autonomic reflex test, several blood tests, a CT scan, a meeting with a urologist, meeting with a neurologist, and my favorite, the balloon up my rear end test. There were more, but I can't remember them all. Whole lotta pokin and proddin........

Overall, I'd say the clinic is the standard by which medical clinics ought to emulate when it comes to promptness. The LONGEST I waited for any appointment in a waiting room was 12 minutes (yes I timed it once I got curious on how prompt everything was). I had at least 20 nurses and technicians apologize for the wait when I was supposed to be in at 2:55 and they brought me in at 2:57. The place is also spotless, signs clearly mark everything, and every person I ran across took a Mayo-approved friendly pill before they came to work each day. Even the janitors were courteous and were able to direct people to certain parts of the clinic. Reminded me of Disneyland for sick people, but my God there were some awfully sick people there. Made me feel like I don't have it so bad.

The results?
Apparently I am not insane or crazy or stressed out as some Doctors have suggested. Not to name names, but that was the University of Utah's theory.
Though I found ways to amuse myself by timing the nurses and technicians and asked them to verify their name and age after they asked me to verify mine (none did), it wasn't really all that fun to be at the Mayo Clinic for a week trying to diagnose a condition that will probably end up in some Medical Journal.

For awhile I thought a bit like maybe Utah wasn't so far off base because trips to various doctors have been met with head scratching, the phrase "interesting case," and one doctor even said he'd shoot himself if all his patients were like me. But this trip seemed to have confirmed there really is some neurological reason for my troubles. For the first time, a doctor said to me "this is 100% a neurological condition" and he seconded the theory that I got from UCLA earlier this year. The basic theory Conus Medularus Myelitis. The Conus Medularus is a little bulblike structure that sits at the base of the spinal cord and controls all the pelvic functions.
The cord looks like a skinny tree or the stalk of a green onion, the Conus is the root ball at the bottom, and the nerves all come out of there like the roots. Where the roots all come out is called the Cauda Equina (latin for "horse's tail"). Something - maybe someone? - is pinching, poking, stabbing, compressing, sitting, standing, leading, biting or doing something that my Conus doesn't like, and my Conus is expressing its displeasure through my 5 famous symptoms.

I don't have cancer, and I don't appear to have any other ugly diseases that will shorten my lifespan. That's the good news. The bad news is they still don't know the cause. The relatively high white blood count in my spinal fluid (16 white blood cells per cubic millimeter - no more than 5 is normal) is the only study that has actually measured or quantified this (other than the tests that confirmed the symptoms). None of the MRI's CT scans, blood tests, urine test, etc. shows the problem.
Nothing. Not the high resolution MRI at UCLA, not the CT scan at Mayo, nothing. Only the spinal fluid count. It basically says I have an inflammation or an infection in the spinal fluid, which the neurologist says confirms the Conus theory.

Like I said, it's a good news/bad news thing. Because we don't have a diagnosis of the cause, we don't have a prognosis, no determination on whether it will get worse or better, and of course, no treatment. No surgery, no medications.

Soooooooo, where does it go from here? The symptoms continue and yes it's a royal pain to manage, but like I said, I feel fairly fortunate after seeing the people running through the clinic. Overhearing normal looking people talking on their cell phone in the waiting room about their spreading tumor is a sobering piece of eavesdropping.

I will have to go back to the clinic sometime in the next month for some follow up visits. I need to send the Mayo docs more records from UCLA, most notably on my spinal fluid and the microbiology from that. The neurologist said I don't need many more tests, only someone to really ponder my situation and seek the solution. I hope he was meaning himself. I hope he consults the UCLA doc.

That's the story. There really isn't any need to reply to this. I really didn't spend 2 hours finding a list of people I hate to send this to, so I know you care. :) What I really hope is you pass this to someone who has had this or knows about it or knows of a doc who knows about it and puts me in touch. I'm dealing with a very rare, downright bizarre neurological condition at the spinal cord and central nervous system, something that is hard to test for and probably even harder to treat, so any piece of data or information I can wrap my fingers around would be appreciated.

The flight home was great. 90 minutes from Scottsdale to Henderson, averaging 160 knots.


Mike

Late 06 and early 07: Trips to University of Utah and UCLA

2/11/07 The MRI was negative for all structural issues related to the cauda equina and the conus medullaris. The symptoms were almost spot on, but the MRI was negative yet again. I am heading back to UCLA next week for a spinal tap which they say is the next step.

In researching spinal taps, I see there aren't a lot of happy reasons to do them. One of the reasons is multiple sclerosis, something I seem to have a lot of symptoms of. There are a bunch more, like polio, certain cancers, etc., so I guess there is no point speculating until the test is done and they have another theory.

Symptoms update:
I have been swimming almost daily and eating proteins and complex carbs. Not hungry all day now that I'm almost completely off sugar. My weight is down about 40 lbs and I'm about 265-270 now, which puts me about 20 pounds over my target, as I played my professional baseball years at 250. Hard to believe I was getting so disgusting, and while I never saw the scale at my worst, I'm pretty sure I hit 310-315 because the largest pants I've ever worn (42's) were starting to get tight.

I am not so tired in the afternoon and I see and feel some definite improvement in my fitness. My legs tingle once in awhile but nothing like before. Seems that the heavy tingling a few weeks ago was probably related to beginning the swimming regimen and waking up things that have been asleep for awhile.

Unfortunately, I have begun to occasionally lose control of my urine at night. The first time was a few months ago while I was in Texas, and it has started to happen now at home. Last week I wet the bed 4 nights out of 5, so I have had to buy some adult diapers and pads to keep from having to wash the sheets every night. It just leaks out and I don't wake up until I feel it on my leg or backside, which is too late. Then I get up to try and finish. No fun.


1/25/07 I just got home from UCLA yesterday. I had the consult on Friday and another MRI yesterday.

Conus medullaris myelopathy is the theory that Dr. Sheih has. The neurological consult and exam on Friday were lengthy and thorough. They were prepared for me and had read my symptoms and history prior to meeting me. They tested all kinds of muscles groups for strength and sensation. Turns out in addition to all my known symptoms I have some weaknesses in my toes, mostly lifting them, and some loss of sensation all in the underside (perineum??). One test was a prick sensation test with a thing that looked like a golf tee with a needle where the golf ball would sit. When they applied this to my area, I could feel the pressure (felt like she was gently pushing with her finger), but I couldn't really feel the prick sensation. She did it on my knee to show how it should feel and it was plainly obvious that I have lost a lot of sensation feeling all in my pelvic area, which probably explains why the sexual dysfunction exists.

My legs have gone through all kinds of feelings over the past week. They have gone from the total fire burn feeling last week to isolated areas of burn, both legs, and also a feeling of my legs feeling heavy.
I swam 3 times last week, I worked out Monday, and I swam today. I plan to keep that up as it does seem to help some.

The MRI they did was of the conus medullaris, which I understand to be a pretty small area at the base of the spinal cord. This was a pretty lengthy and intense MRI, and they did it with and without contrast.

The test was about 90 or so minutes and only focused on a 2 inch by 3 inch section of the base of the T spine. They said this was a very high resolution and very thin slice type MRI to specifically look for trauma, lesions, tumors, etc. in the conus medullaris. Will advise on the results of the MRI when I know more.


1/15/07
I got the reports from Utah along with the reading of the pelvic MRI.
As a result of these reports, I have a new hypothesis.

Univ Utah docs could draw no common link for my problem(s). They thought it was all independent and unrelated. They did a glucose tolerance test for the impotence which was normal. They even suggested to Kathy outside of my earshot that all this is probably related to stress. Hmmmmmm, having one of the best years of my life financially and this is about stress. Might be stressing over going to doctor after doctor with no answers.....that's possible.

The MRI was normal except for the following:
1) Transitional lumbosacral vertebral morphology with bilateral assimilation joints and lumbosacral facet arthropathy.
2) Absent left piriformis muscle (developmentally), and no vestige to suggest atrophy.
3) Bilateral varicoceles with greater filling left by ectatic tortuous testicular veins.

It got me to thinking about blood flow.
The neurological exams are all negative, so maybe the nerves are ok, but I'm low on blood flow. My rationale:
1) Varicoceles are enlarged veins in the testes caused by poor blood flow, sometimes related to the backflow valves not properly working.
2) An erection is, among other things, a blood flow function. Without getting too personal (I guess we've already crossed that huh), I still have all the pre-fluids when I'm aroused and when I use the self-injected medications of Prostiglandin, Papaverine, and Phentolamine, I have a great erection with a normal large volume on climax. When I use these meds, I don't have any dysfunction because the blood is flowing.
3) I have intermittent and periodic varicose veins on my legs just above the knees. They have been worse when I was heavier, and fell sometimes.
4) I have been swimming all this past week and now my right leg has been tingling all up and down it ever since, almost like icy hot rubbed on the inside. Feels like something has come alive in there, though I'm a little nervous about it.
5) The bladder needs to be innervated to operate, yes, but doesn't blood flow have anything to do with the muscle contractions that operate it?
6) Ditto for the bowels?
7) Leg weakness is intermittent also, and seems to me now in this line of thinking to be caused by a restriction of blood flow.
8) The lumbosacral facet arthropathy noted in the MRI appears to be the beginnings of a joint disease in the area. From my experience in claims adjusting, most joint diseases are initiated by a lack of blood.

Is this line of thinking possible? Are there tests that can measure the blood flow in my pelvis or some way to measure if something is restricting it?

Should I try to go back to a regimen of rigorous exercise to see if I can improve blood flow and possibly reverse the process?

Oh the questions..........

2005 to 2007: Visiting Doctor to Doctor

1) Urinary problems. I have to go numerous times a day – between 15 and 25 visits, most times with tremendous urgency and often leaking. 10-20 seconds of warning and that’s it. I also get little flow after many of these emergencies, usually an eggshell or two’s worth. Flow is weak 90% of the time. As a pilot, I have had to carry a relief bottle even for short flights, and have had as many as 3 or 4 urinary emergencies in a less than 2 hour flight. Leakage is common. Despite the heat in Las Vegas, I sometimes resist drinking anything for fear of another emergency. I also have to urinate sometimes at night which I never used to do, and in order to reduce that, I press on my stomach while urinating just before bed to try and empty it out. Most times when I pee in the morning it smells quite bad and is also darker. I have also lost control of my urine at night sleeping and wet the bed. First time was in October 2006, one episode. Happened again in February 07, and had episodes 4 of 5 nights. I couldn’t feel myself urinating in the bed but could then feel it on my leg, but then too late to stop it. I bought adult diapers to stop wetting the bed, but since buying the product have had no incidents.

2) ED. I am able to get a natural erection once every week or two, but cannot maintain it longer than 10 seconds. Natural sex is not really possible. I do get the pre-ejaculation fluid, and still get that from thinking about it. I seems there just isn't any blood going there. I haven't used any oral medications for this since January 2006. I began using an injection process of getting an erection in November 2006. I self administer, using insulin syringes, a mixture of

3) Occasional loss of control of the rectum. In June 2006 on a Sunday morning, I woke up and used the bathroom, ate breakfast, and then went #2. I got up and got ready to go outside and skin the palm tree in the front yard. Put on some shorts, knee pads, and grabbed a knife. I bent down on my knees, realized I had to poop more, couldn't hold it, and then had to go take a shower because I made quite a mess of myself. This happens once in awhile, maybe 3 or 4 times in the past year. It isn't diarrhea. Possibly softer than normal but not runny. Normal color.

4) Instability and weakness in my legs. I can walk, but I have issues trying to run or use one leg, such as stairs, or picking up something off the ground. Balance on one leg is difficult. On occasion, one leg or the other will give out briefly. I feel clumsy when I try to run, and I haven’t been able to play baseball or basketball or do anything that requires quickness and agility. I can hit, throw batting practice to the kids, catch and throw fine, but bending down to field a ground ball, especially to one side or the other, just isn't within reach anymore.

5) Saddle Anesthesia. There is a general numbness in the saddle area with a corresponding hypersensitivity in the feet. UCLA found this one.


Tests that have been done
All kinds of blood work has been done, including PSA now. All have been negative. All urine tests are negative, though my urine does smell in the morning. Rectal exams from 5 docs now have said nothing abnormal, with the exception that one urologist and a colorectal surgeon said my sphincter clamping pressure was fairly weak.
I've also had a rectal ultrasound, which indicated my prostate was 53 grams. It also revealed the day I had it that my bladder we completely full, yet I couldn't provide a urine sample right before the test. The Doc was going to catheter me, but I then drank some coffee and managed to urinate some. That doc figured I had BPH/enlarged prostate and prescribed Flowmax and Avodart. Flowmax helped for a week or so, mostly with morning urination, but didn't stop the afternoon emergencies. Avodart did not help. A month later I went to see that same urologist and he did an exam where you catheter a tube inside the penis with an eyepiece. That exam revealed no blockages or abnormalities. Doc said to stop taking the Avodart and use the Flowmax as needed.

August 2, 2006 I had an MRI, which revealed a massively enlarged piriformis muscle having a “mass effect” on the Lumboscaral nerve. Referred to a neruosurgeon and a colorectal surgeon. Colorectal (mid Sept 2006) said this wasn’t her area of expertise, and her exam noted the weakness in the sphincter muscle. Neurosurgeon (mid sept 2006) referred me to pain management Dr. for injections into the piriformis to see if there was any change in symptoms.

A secondary reading of the MRI suggests an "avariant insertion of the piriformis". This Dr. also said that lesion alone does not explain the incontinence or impotence. To work that up he would MRI the entire cord and brain to look for any demyelinating lesions in the brain. Also Normal Pressure Hydrocephalus or some variant might present like that in a younger person.

MRI’s of the brain, cervical and thoracic spine done at Desert Radiology in October 2006, all negative. MRI of the pelvis at University of Utah, 12/07, negative. MRI at UCLA of the Conus Medullaris area in 1/07, negative. CT scan of the head 1/07, negative.

Spinal Tap at UCLA 2/07, pending results.

2005 and 2006: What is wrong with me?

Here's the story of my mystery symptoms through July 06:

Approximately holiday season 2004 I remember going to the bathroom to #2, I would finish, wipe, get up and flush, and within a couple of minutes have to come back to urinate. Kind of seemed like when I sat to move the bowels it was blocking the front side, and then when I got up it would release. First and second time I thought nothing of it, then when it started happening more regularly, I distinctly remember thinking about asking a doctor friend to see if that was strange.

In Spring of 2005 I was starting to have a lot of urgency in urinating. I figured coffee and other caffeine were causing it since it's a diuretic, so I cut way back on that. I first noticed some signs of ED at this time too. Was able to become aroused, but had trouble keeping it.

June 2005 I got a vasectomy. On one of the follow up visits (roughly July or August when I had to sample check the procedure), I discussed with the urologist that I was having a lot of urinary bathroom emergencies and some ED symptoms. He prescribed Uroxotrol and Viagra. I filled the Viagra prescription and not the uroxatrol because I was afraid of it when I read the label.

I didn't use the Uroxatrol at all (not even the samples), and used the Viagra - also Cialis and Levitra. Initially these worked well, but as the summer turned into fall, they became less effective and I also noticed what felt like a big sinus block under my eyes which would last several days. In October or so, the ED medications only made the sinuses act up and had almost no effect where it was supposed to.

January 2006 I came to realize I might be sugar sensitive and realized I was having wild mood swings in the day along with blood sugar highs and lows. Falling asleep at my computer at 3:00, things like that. I modified my diet, substituting higher protein and complex carbs with great success in eliminating almost all moodiness. My sugar sensitivity - possible addiction - seemed to be causing my mood issues and this remains good with the right foods. The by product is I've also lost about 15 pounds.

I have lost control of my bowels about 4 or 5 times in the past year also. Most recently was August 14 and prior was June. Both in the morning. Stool normal color and texture.

I also now drink VERY little coffee, a cup a week or less, I consume 10% of the sugar I used to (which was substantial). I drink water, but still not as much as I should because of the urinary problems. I carry a cup in my car and often have to use it at stop lights. If I drink alcohol with friends in the evening, I have to use the bathroom at least 2 times per drink.

After having an MRI in August 2006 showing an enlarged piriformis muscle, I did about 2-3 weeks in chiropractic and deep tissue massage, along with stretching. This actually made the symptoms a little worse, as I awoke 3-5 time a night to urinate, each time less than an eggshell in volume. I am used to sleeping through the night and this episode of night awakenings made my sleep awful and I was exhausted during the day. I usually now have to urinate at least once every night, which is still difficult to manage.

Current symptoms:
1) Urinary problems. I have to go numerous times a day – between 10 and 25 visits, many times with tremendous urgency and often leaking. I also get little flow after these emergencies, usually an eggshell or two’s worth. As a pilot, I have had to carry a relief bottle even for short flights, and have had as many as 3 or 4 urinary emergencies in a less than 2 hour flight. Leakage is common. Despite the heat in Las Vegas, I sometimes resist drinking anything for fear of another emergency. I also have to urinate sometimes at night which I never used to do, and in order to reduce that, I press on my stomach while urinating just before bed to try and empty it out. In the past few months, most times when I pee in the morning it smells quite bad and is also darker.

2) ED. I feel like I did before puberty in that I am interested and love women and I'm just as bad as ever at spinning my head to look when I see a great looking woman. My wife is great and I feel no less attracted to her than ever. I am able to get an erection once every week or two, but cannot maintain it longer than 10 seconds, so sex is not really possible without the pills. I do get the pre-ejaculation fluid, and still get that from thinking about it. I seems there just isn't any blood going there. I haven't used any medications for this since January at least.

3) Occasional loss of control of the rectum. In June 2006 on a Sunday morning, I woke up and used the bathroom, ate breakfast, and then went #2. I got up and got ready to go outside and skin the palm tree in the front yard. Put on some shorts, knee pads, and grabbed a knife. I bent down on my knees, realized I had to poop more, couldn't hold it, and then had to go take a shower because I made quite a mess of myself. This happens once in awhile, maybe 3 or 4 times in the past year. It isn't diarrhea. Possibly softer than normal but not runny. Normal color.

4) Slight weakness in my legs. I can walk, but I have issues trying to run or use one leg, such as stairs, or picking up something off the ground. Balance on one leg is difficult. On occasion, one leg or the other will give out briefly. I feel clumsy when I try to run, and I haven’t been able to play baseball or basketball or do anything that requires quickness and agility. I can hit, throw batting practice to the kids, catch and throw fine, but bending down to field a ground ball, especially to one side or the other, just isn't within reach anymore. Have thought this was due to being overweight, which has prompted the weight loss of late. I went on a National Park tour in Southern Utah July 2006 and we hiked 2-7 miles every day and was able to do that.

Tests that have been done
All kinds of blood work has been done, with the exception of a PSA test. All have been negative. All urine tests are negative, though my urine does smell in the morning. Rectal exams from 5 docs now have said nothing abnormal, with the exception that one urologist and a colorectal surgeon said my sphincter clamping pressure was fairly weak.
I've also had a rectal ultrasound, which indicated my prostate was 53 grams. It also revealed the day I had it that my bladder we completely full, yet I couldn't provide a urine sample right before the test. The Doc was going to catheter me, but I then drank some coffee and managed to urinate some. That doc figured I had BPH/enlarged prostate and prescribed Flowmax and Avodart. Flowmax helped for a week or so, mostly with morning urination, but didn't stop the afternoon emergencies. Avodart did not help. A month later I went to see that same urologist and he did an exam where you catheter a tube inside the penis with an eyepiece. That exam revealed no blockages or abnormalities. Doc said to stop taking the Avodart and use the Flowmax as needed.

August 2, 2006 I had an MRI, which revealed a massively enlarged piriformis muscle having a “mass effect” on the L/S nerve. Referred to a neruosurgeon and a colorectal surgeon. Colorectal (mid Sept 2006) said this wasn’t her area of expertise, and her exam noted the weakness in the sphincter muscle. Neurosurgeon (mid sept 2006) referred me to pain management Dr. for injections into the piriformis to see if there was any change in symptoms.

A secondary reading of the MRI suggests an "avariant insertion of the piriformis". This Dr. also said that lesion alone does not explain the incontinence or impotence. To work that up he would MRI the entire cord and brain to look for any demyelinating lesions in the brain. Also Normal Pressure Hydrocephalus or some variant might present like that in a younger person.


Meds
Currently taking nothing. Have active RX for Viagra, Flowmax, Avodart. No other meds in the past few years other than an antibiotic for a short time after bronchitis or something like that. I still take no meds for little aches or groans, and I don't take any sleep meds.

Other Treatment:
Chiropractor initially seemed to reverse the intensity of some urinary symptoms . Leg weakness was reduced, but erectile symptoms have no change. I can usually make it through the night without having to urinate, but not always. Deep tissue massage did worsen all symptoms so they were discontinued.

Summary:
Urinary symptoms came first, then ED.
No low back pain but leg weakness as described above.
I have had no low back injuries and it is not in pain.
Not aware of any family Lumbosacrral or neuromuscular disorders except my mother got a shunt for normal pressure hydrocephalus (NPH) in 2005.
I haven't had any flulike symptoms in 2 years, and in fact, this past winter was the first time in years that I didn't get sick to any degree whatsoever. I'm usually first in line to get bronchitis and huge coughing, etc. but this year I was remarkably benign.
The urine isn't painful but is never complete and it starts and stops a lot. I feel like I'm running around with a 90% full bladder. I have all these emergencies but I never empty it out.

Additional history:
In 2001 was working in LA. My wife shipped our black Jeep to me in LA and I drove it around for hours a day in LA. I began noticing parasthesia on both legs, but no pain. Legs would give out like they have been now, too. I saw a neurologist, who had me in an MRI tube in 40 minutes, fearing some king of tumor or something. MRI negative. He then sent me for an EMG, also negative. He wanted to them do a surgery on the back, which I declined. I went to see a chiropractor, and this resolved the problem within a week or so.

December 2004: How MS started for me

Around Christmas of 2004, I remember sitting down on the toilet for a normal nature call. I emptied my bowel, wiped and flushed, and walked away as normal. Within a minute or two, I realized I hadn't emptied my bladder, so I returned to the restroom to do that. I didn't think much of it at the time, but when it happened again, and then a third time, I began to wonder if that was normal.

I was fortunate and didn't have any pain. The only symptom that showed up initially was this strange process of not being able to empty the bowel and bladder on a trip to the bathroom.

As the winter turned to spring of 2005, I began having what seemed to be the typical prostate symptoms associated with men my age, and urinary frequency and urgency became the norm. I also began to have accidents and ended up having way too many situations where I had to go home to shower in the middle of the day. Accidents included urine and stool.

Soon my legs joined the party and I began to stumble alot, and I fell quite a bit too.