Becky,

I'm going to try to make this short because I had plasmapheresis today and I'm exhausted, but wanted to follow up on your last message. I don't know if there's a juvenile form of these illnesses, but thinking back, my problems first started when I was in sixth grade. My hips started hurting so badly I couldn't walk properly and had to stop sports. My pediatrician said it was growing pains, but thinking back, I realize it was the start of SPS.

It got worse very slowly, but by the time I was a freshman in college I knew that something was very wrong. Of course the student medical center thought I was just a head case and sent me for counseling, and the neurologist I was seeing at the time said I had some minor TMJ and arthritic issues. He was considered one of the best in the city so (stupid me) I continued to drive up to see him instead of going to UVA Medical Center, where they might have actually picked up on this stuff.

I learned to do medical research when I was taking the preliminary courses for the AI program as you had to declare psych and then apply for the programming courses. I didn't get accepted into the programming part, which left me a psychology major until I realized I had no interest in it. I guess it paid off later when I knew what neuromusclar junctions and GABA was and was able to help piece this puzzle together.

I had some MG/SPS related symptoms that sent me to the ER several times in college, but the ER never referred me on and eventually stopped giving me painkillers.

I don't think any doctor I saw really took my condition seriously until I lost the ability to walk--except for my pain specialist who thought that I had received the worst treatment he'd ever seen, but admitted he was out of his depth and could only treat the symptoms.

I just recently had a follow up with him and he couldn't believe the difference. I was actually able to move and he commented that I actually have a personality now (he said it more politely). I told him that its hard to even think when you are covering up constant 8/10 pain. I probably won't ever be totally out of pain, but honestly, there were times that the only thing that kept me going was that I wanted to prove the doctors wrong who were telling me everything was in my head.

I wish I'd known 10 years ago that a couple $15/month drugs could have changed my life. Anyway, I need to go to bed before I keel over.

Jeff

EDIT: Oddly enough, I think SPS was one of the diseases I researched back when I was in college, but rejected it due to the fact that I was walking all over campus without falling (at least until my last year when walking became a day to day thing), and the pictures associated with SPS articles look more like someone with tetanus, which is also why my nurse told me she didn't think I had it (I don't want to scare you--due to the fact that you were older when you got it, it will hopefully advance slowly enough that they can keep it under control, I'm just afraid that I have something to look forward to someday).

MG I somehow never came across in my research until my neurologist was looking for it and I based my search on his questions. I just wish he had asked the questions before clearing me for surgery, as I would have been able to warn the doctor they were looking for it. As it turned out, he used the fact that I almost died due to neuro-muscular blockers as diagnostic criteria. I later learned he does all the testing for the practice and he's the guy to see to be diagnosed, but not the doctor you want treating you. My sister thought he was a lab tech until I told her he's my doctor. He was partially correct in one thing, though. He told me that my legs weren't myasthenia gravis, but he dismissed it a arthritis and didn't look any further. My current neuro reluctantly concluded it was MG since I was told by her rheumatologists that I don't have arthritis, but she still wants another opinion. SPS never crossed her mind until I suspected it, then she began to wonder.

My GP thinks that the SPS has destroyed my joints by holding them too tight, my neuro still thinks there's arthritis and told me to see an expert at GW or UVA, but she thinks TNF blockers can help MG, so I guess she has an ulterior motive for wanting me to have arthritis. I trust her, though, and she won't try to put me back on them unless someone can tell her definitively that I have arthritis. Maybe now that I have SPS she's changed her thinking...I'll have to remember to ask.

Also, do you want to switch to private messaging? I've noticed our topic has become quite popular and my logic for leaving it public is that it may help someone who has no clue what they have and is trying to be diagnosed with something (like I was for so many years), but if you feel more comfortable discussing this privately, I'd understand.