Superman

A depressing moment for me last year was when Christopher Reeves died. For me, he was the symbol of hope for nerve regeneration. He was pushing the technology, pushing the scientists and doctors, and testifying before government bodes for more stem-cell research.
All things that I, as a Lowly-Non-Celebrity-Although-I-Like-To-
Think-I'm-Famous citizen, could not do with as much success.

For me, nerve regeneration is the only thing that will be able to give me a "cure". As long as not too much more time passes.

I guess this is the article where I explain what is actually wrong with me. So here goes:

Last year I was finally diagnosed. I have a name for what's wrong with me, albeit a very long name. It is: Moderately Progressive Axonal Motor Neuropathy. Basically it means I don't walk so good!

My symptoms started when I was 29 and I'll be 44 this year. I had unexplained fatigue in my legs along with terrible nerve pain (picture a knife stabbing your calves and multiply by 10). The leg fatigue would be so bad that it would make my entire being tired too. I had to leave my job with IBM because the bastard docs there did not believe my neurologist when he said I could only work 1/2 days. Bastards. Can't say too much bad about IBM since the hubby still works there, but Bastards.

Over those years, my symptoms progressed and the docs were perplexed. They couldn't figure out what was wrong with me. After seeing rheumatologists, vascular docs, and podiatrists, I finally saw my first neurologist. He diagnosed me with possible RSD (Reflex Sympathetic Dystrophy) and gave me my first anti-depressant prescription. Even tho he was one of the few docs who didn't say "it's all in your head", he did recognize the symptoms of depression... which any sane person would have if they were sick and undiagnosed. Very depressing.

Once moving to Vermont, I found a neurologist there who performed my first (and not to be my last) EMG (Electromyography) Nerve Conduction test. Picture long needles inserted into a leg muscle, long enough to reach a nerve. Then picture that needle having pulses of electricity flowing thru it. Torture. You can actually "hear" the nerve working on a little speaker on the EMG machine. Very Painful.

That neuro and subsequent neuros wrongly diagnosed me with Peripheral Neuropathy. A weird diag considering that my problem was always described (by me) as "my legs feel like I've run a marathon when I've only walked from my couch to the bathroom and back". There was obviously something wrong with the muscles and how they worked, not with my peripheral nerves which are mainly sensory nerves.

The way my Axonal Motor Neuropathy has been described to me is like this:

• It's effecting the longest nerves in the body first (hence, the legs)
• The nerves that have "died" are calcifying, so there's no hope of regenerating the ones that are dead
• The reason my legs fatigue so quickly (but still test at normal strength levels) is because the nerves are actually getting tired. If a nerve for one muscle has died, that muscle will attempt to get nerve impulses from the nearest working nerves. So those working nerves are working overtime and they get tired. That's what makes my legs feel tired.
  

So that's my story and I'm sticking to it.

If anyone else out there has this problem, please comment! I've never met anyone else who has this disorder and my doctors are still searching for it's cause. Right now I'm classified as "idiopathic". K... don't go there. It means "of unknown cause". I've had some genetic testing for the current known variants of Charcot-Marie Tooth Disorder but they were negative. Odds are I do have some variant of CMT (in the muscular dystrophy family) but one that's defective gene has not yet been discovered or has not yet had a test developed for it.

So I wait. And just live with what I've got.

Thank God for great hubbies and funny pooches and wonderful friends.