Hi!
I'm Deb. I'm 62 and live in Pennsylvania, USA.

I've been mis-diagnosed with MS by my old neurologist for 30+ years. In fact, I was on Avonex (a weekly MS injection) since 1998. That's a long time!

This might sound strange but I always knew that my old neuro wasn't right for me. In fact, I said that I wasn't going to see him again 30 years ago after I saw him the first time. Naturally, she said I was. I was in such poor shape at the time, I had no strength to argue with her so off I went. I should say here that I don't drive and Mom did. So, I stuck with him for all those years. I did periodically bring up not going back to see him but was met with the same brick wall.

Now, I'm not putting Mom down. Not at all! She stuck with me through thick & thin. Through all of the changes, hospital stays, PT, my learning to walk again, mood swings, etc. She did the best that she could without the knowledge.

Back in the 70s I was admitted to the hospital in Pittsburgh, PA. They did find the ataxia back then but why the old neuro didn't follow up on it & said that I had MS, I'll never know. He did tell me that Pittsburgh didn't know what they were talking about.

During that time, I've been sent to pain management. They wanted to put me on the newest pain meds since I was in severe pain 24/7. They didn't when I told them that I reacted to meds easily. They asked which ones but I only remembered a few. I guess alot of you guys know that in some reactions you don't know what happened...just that it happened! So, this place called my then neuro asking what all I couldn't take. He couldn't tell them since he didn't write it down. All he could do was confirm what I said.

Of course, he sent me to PT for different things. He told me that I have Fybromyalgia among other things. When I was 8 years old, I was told I have Epilepsy & was put on anti-'convulsive meds right away. I'm told now by my new neuro, who did all kinds of tests, that there isn't any sign of Epilepsy. They haven't said anything about the FM so I'm confused on this. Maybe they're waiting for seizures or the pain to start so they can tell for sure?

Long story short, my mother passed away about 4 years ago & I was able to change neuros. I asked to be taken off those MS injections. That was like coming out of a fog! I also asked if I could cut down the anti-convulsive meds (I was on 3000 mg. a day) & that gave me more energy for a while. The fatigue, pain, dizziness, and just feeling off is back. I recently saw my new neuro last week & he's doing all kinds of tests. I'm glad this guy listens & is keeping an eye on things.

Geez. This is turning into a novel! I've always tripped over nothing. I jokingly called it tripping over the rug or tripping over my feet. I have had really bad hand tremors and they're slowly coming back. I also get those spams in my legs. I also forget easy & forgot to tell the new neuro that! I'll have to journal that so I don't forget. That helps!

I guess what I really need is information & to talk to someone else with this condition. Are there magazines that will inform a person about this? I know there are some websites. I haven't checked them all out but the ones I've seen use the medical terms. I'm hunting for one that speaks to you in plain old English. I'd appreciate any & all information you have even if it's just pointing me in the way of information.

I'm glad to meet you guys & hope to participate here alot!
Deb