Dalfampridine
 

Saw my Neuro-muscular Dr today and he ordered this new medication to help with my fatigue. I was wondering if anyone is taking this. I think he wants me to try Albuterol again. He said if it helped he would give me something for my tremors.
He did give me some good news. He said the IVIG treatments were helping my overall strength but it was not such an improvement that I could feel. At least I now know I'm not wasting money or time doing IVIG.
Mike

Whatever you do, I hope it helps.

:hug:
Annie

Tired after about 4-5 hours. Yes my B12 has been checked every month.

He feels Albuterol will be helpful in my case. We tried it once but the tremors were just too bad. If this new drug doesn't help he wants to try Albuterol again. He actually looked for a study to put my case in but the only one he could find that fit was in China.

I can assure you my head nurse (wife) will check this out very carefully. I am not looking for my health to be as it was but would like to be maybe 50% of what I was. About 3 weeks ago I was down for 7 days and was so weak I could barely walk 30 feet and my legs ached like I had run 5 miles. Then woke up one morning and it was all gone.

The thing I like about this doctor is he examines you in great detail then compares results with past notes and stays on top of all the latest news on MG and MS. Plus he thinks outside of that box they put you in. His bedside manner is horrible but I know that going in and it's my choice to see him. My wife wants to hire a hitman.

I do not have any heart issues. As for the Albuterol there is a study that shows improvement in MG patients that have familial MG which is my case. He strongly believes this will help.
Mike

Hello Navy! :) I'm new here--not familiar with everyone, as yet. Can you tell me what is causing or believed to be causing your "tremors?'

Nice to meet you....

I used albuterol for my asthma and it really helped. The neuro thinks my previous exacebaeration of asthma may have been myasthenic crisis. In retrospec, I agree with him. During those "asthma" episodes, I spent most nights sleeping in the recliner ( too hard to breathe laying down). I spent most of my days there too, too weak to move and barely breathe to talk.

Let me know how the albuterol works for you and what dose he puts you on.

thanks
kathie

My neuro-muscular Dr thinks it's the Cellcept. He really wants to try the albuterol again. Retiring from the Navy was the smartest thing I have done in my whole life except for marrying my wife of 52 years.

Kathy last time we tried the albuterol it was a small dose maybe 5mg and slowly increase to 3 a day but never got past the first step. I was shaking so bad I could hardly eat.

As for this new drug Dalfampridine I am having a hard time finding it. Haven't found a source yet.
Mike

Mike,

Have you seen this?

http://ampyra.com:80/about-ampyra/what-is-ampyra/

Yes it was one of the first things I read. Still haven't gotten any yet.
Mike

52 years of marriage? Wow! That's awesome.

I have been married 32 years and I am happier in my marriage than I have ever been.


My parents have been married for 64 years. My dad said, "According to Hollywood, staying married that long is plum out of fashion."

I was just diagnosed on January 31, 2013 so I am new to this disorder. It sounds like you and I have similar symptoms. MG affects my legs and I am struggling with not being able to do things that I could do before my symptoms began a year ago. I cannot exercise, go dancing, play with my kids or my dogs. I can stand for about 20 minutes to do the dishes and then my legs get so weak I can no longer stand and my husband will say to me, "you better sit down before you fall down" because I am stubborn and just want to finish the task and I will push myself beyond my limit. Also, I tend to overdo it when I can walk or stand to do something and then I can't do anything for several days. I am trying to learn to do a little bit at a time in moderation to prevent falling. At my last appointment, my neurologist increased the Mestinon from 3 times a day to 4 times a day. I hope your new medication helps you. Good luck to you :)

Your legs sound like mine. I don't do dishes (I know not everyone has this luxury--my house is full of teenagers) because that squanders my little strength. One thing that might help you is a rollator: a rolling walker with a seat. I take mine if I have to go to, say, a big department store, or if I want to go to the zoo. It allows me to sit and rest at intervals--sit while I'm looking at something on the shelf; sit at each exhibit; sit while waiting in the check-out line. That way my strength is constantly renewed, and I can be up and around for much more than that 20 minutes.

It also gives you some extra stability.

Get a high stool for your kitchen, for the same purpose. You'll get in the habit of sitting every few minutes while you're cooking or doing dishes, even if you can't sit the whole time. That way you conserve your strength.

Abby

p.s.: try not to worry about feeling like an invalid with your walker. It may have the opposite effect, psychologically. When I use mine, it makes me feel like for someone with a chronic illness, I sure do zip around well.

I tried to hold the door for an old lady at church the other day, and she said, "Oh, my, I should be holding the door for you!" But she was wrong. My legs give out fast, and my balance isn't good, but I'm not in pain like she is, and when I'm not actively collapsing, I'm fast. :)

Abby

[QUOTE=shellbell75;983417] me, "you better sit down before you fall down" because I am stubborn...finish the task and I will push myself beyond my limit... I tend to overdo it...I can't do anything for several days...QUOTE]

Good grief, I saw....me.... :eek: :D

It took me a year of overdoing it, several falls and having vicious cycle of spiraling down before my Irish stubborness gave way and I learned and accepted my limitations. That was a very rough year. I can do no more than before, But I am much more stable since I accepted my limits. I use a stool in the kitchen and make my daughter do the dishes. I save my energy for things my daughter cannot help with. I sit and rest between each task. I received my disability placard today and I am not embarrassed to use it. I should use a walker for the mall, but my daughter said she would be embarrassed if her friends saw me. So I gave way to my daughters vanity and shopping must be carefully planned and scheduled.

Is he going to try other treatments besides mestinon?

kathie