My Visit with Dr. McCluskey

[lhagsjr]

Hello All,
Today I had my appointment with Dr. McCluskey(Founder of University of PA AlS Center). He did a full exam. His diagnosis is BFS. He states I have no signs of atrophy. He all stated my strength is very good. Same with my reflexes. A complete normal exam was his exact words. He did not order further testing and he is not worried at the least. He said its my decision, do I want to come back to see him in 4-6 months or do you want to just learn how to deal with the twitching. My only complaint is, I asked him if there is anything I take or do to get the twitching to go away and he said no. He just told me to avoid all caffeine. Of course I didnt have any twitching in his office which is frustrating. He said a few interesting things I thought I should share in regards to twitching:

1.) If its ALS twitching it is usually in one place for a long time before spreading. It also usually doesnt spread "all over" for a long time.
2.) He also said when its ALS twitching it is pretty much constant, like 24/7.

My feelings on the visit are mostly positive. Im excited that a top professional in the neuromuscular field does not think or didnt even consider ALS? My questions is this. Why do I see(or think I see) atrophy in my arms/shoulders but he doesnt? I guess they can tell if its atrophy because of disease or for another reason(IE lack of use). As far as the twitching he stated there is nothing he can prescribe/do to stop the twitching. Does anybody have any suggestions. Im not 100% convinced I dont have ALS but Im moving on with my life unless another symptom presents itself. Please give me some feedback/advice.

Thanks,
Lou

 

[quadbliss]

Hi Lou,

Congratulations on your negative ALS diagnoses. I think you have the right idea. Put this episode behind you and move on with your life. :-D

Mike

 

[Jamiet]

Lou,

Thats great....... Try to move on. Calcium helps with my twitching.. Someone here mentioned it and it works. Tums is the cheapest form of calcium.

You should feel confident in the neuro.

Move on, unless further symptoms develop.

Good luck and keep in touch.

Rgds,


jamie

 

[zac111]

hey lhaqsir,my visit to the als center in atlanta went the same as yours congradulations my doc said the same thing a complete normal exzam here is what i did when the twithing quit for a short time i took in a lot of potasium bannannas and pinapple juice,and got away from stress for a week i was off work so i spent a lot of time with my 2 children which i enjoy so it helps me keep my mind off twithing and i did alot of fishing swiming and spent some time by myself.i dont know if it will work for you but it did for me.also my doc didnt see twithing either but i had visable twithing all night the night before and even before i wentkinda weird but they stoped when i got in there.just try to do something you enjoy.....shawn

 

[Al]

Hey you guys. You saw good Docs and they say you are fine. Live with it today and for as long as you can. You have been given a reprieve. Don't look back. Look forward. If something happens next year ,well you've had a good year. Enjoy it. A lot can't. Good luck.
AL.

 

[ltr]

Lou - Great news! I know how good it feels to walk out of an als clinic after hearing words like that. I was on a natural high the whole day after an exam like yours. The neuromuscular doc told me the same thing about twitching and als, though many of the pals here had different experiences with their twitching.

A while back Jamie posted a vitamin regimen that he suggested I try. About two weeks after trying it my twitching lessened tremendously. I believe there were periods it even stopped completely. Please go back through the threads and look it up, or maybe he will repost it for you. Vitamin D and calcium is part of my regimen and my twitching is a lot better.

I hope this is something that passes for you and congrats on the exam.:lol: Leslie

 

[DavidGL]

Hello All,
My questions is this. Why do I see(or think I see) atrophy in my arms/shoulders but he doesnt? I guess they can tell if its atrophy because of disease or for another reason(IE lack of use). As far as the twitching he stated there is nothing he can prescribe/do to stop the twitching. Does anybody have any suggestions. Im not 100% convinced I dont have ALS but Im moving on with my life unless another symptom presents itself. Please give me some feedback/advice.

Thanks,
Lou

Lou,
This question is a good one, I think. We all must realize that it is essential to get solid objective opinions from people who are trained and experienced with MND. Suddenly, something odd is going on with your muscles and you are staring at parts of your body you never paid much attention to at all. Then they look different. I've been there too. I'd swear my right calf is smaller than it used to be and when I compare it to my left it *is* differently shaped. But the first thing the docs say is "wonderful muscle tone". When I ask about it they say "it's not unusual to have asymmetry from muscle to muscle". Who'd a thunk it?

The best I've gotten from my neuro was a few weeks ago during last clinic vist. She said "if someone held a gun to my head, I'd call it PLS." But then she added that she is not ready to hang that sign on me yet. So right now I am running with that. Right now...I do *not* have PLS/ALS or any MND. Yes, my legs are getting incredibly stiff and I have physical activity constraints. Yes my voice sounds funny at times and it is no longer comfortable to eat a whole plate of pasta. But I can still drive to work. I can still work in the garden even though it's two hours instead of eight. I can still read, watch movies and enjoy fully the companionship of my spouse. I can still smell the flowers! I *don't* have MND. Doesn't mean I won't next year. But that is next year. Fuggedaboudit...

DavidGL

 

[Sunshine]

Hi Lou. I am so happy for you! It is great that he could tell right away what you had. I'm glad you had a good experience there. Take care, Sunshine