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.

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..........

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