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.