[Nicknerd]

I just wrote a very long post that took me a century to write on the 108 thread, and it was locked! This is now a venting post re. weak fingeers muscles, and not being able to type fast enough before a thread is locked! lol

Seriously, though, has anyone noticed that when your fingers are weak, the rest of you is in reall ybd shape too? I feel like jello today.

[AnnieB3]

Hey, Nicky. I had to see my internist like about two weeks after being in the hospital for my crisis. I hold my mirror in my left hand to put makeup on. Well, my hand contorted and would not stop until I completely rested. It was scary to have happen for the first time. Since yesterday, for whatever reason, my right hand is really bad, even hurts. It's worse off of Mestinon and better on it and I have had increased neck/tongue/jaw weakness in the past two weeks. I doubt it's a coincidence.

I think it's odd how certain muscle groups flare at certain times. Like during my crisis when I could speak but couldn't move or breathe. Unlike you "bulbar" guys!

Anyway, that's my long answer to your short question. Have you been doing more with your hands/arms lately? I hope you feel better soon.

Annie

[tysondouglass]

Im not sure why that post really did get locked, but its fine that it did.

But, fortunatly, my fingers havent really been affected at all, except for when im in crisis.

I know what you mean about the jello thing, im not sure if its something else thats making my throat feel closed, or the MG, but, something is. My pulse is only 98 right now. My legs are pretty tired. but other than that im great!

*edit*

Hope you all feel well.

[Chemar]

just a reminder please that the guidelines are clear on not discussing admin actions on the forum

we hardly ever lock threads or edit people here, but when we do it is for a good reason, and not done lightly.

Tyson, you do have a PM from me re the thread that was locked. It was not related to you and I regret the action had to be taken. I did explain the background for intervening on that thread in my post there.

Nicky sorry you were writing a long post when it got locked, and that your fingers are sore.

But sadly when a few members engage in activity that is against the guidelines, it can have repercussions for others. Hopefully all will settle down now and focus on the support and sharing of information that this forum has always been so good at

again, as mentioned on the locked thread, if anyone wants to discuss my actions, please do so in PM and not on the forum. That IS a guidelines rule
http://neurotalk.psychcentral.com/showthread.php?t=1293

thanks

[DesertFlower]

Originally Posted by Nicknerd

I just wrote a very long post that took me a century to write on the 108 thread, and it was locked! This is now a venting post re. weak fingeers muscles, and not being able to type fast enough before a thread is locked! lol

Seriously, though, has anyone noticed that when your fingers are weak, the rest of you is in reall ybd shape too? I feel like jello today.

An idea to avoid getting your long posts lost (this has happened to me too when my fingers are slow)...highlight your text and copy it before you post it, then if it is lost you can paste the text in a new post.

I agree with you about the weak fingers, if my fingers are weak then usually I am having a really bad time.

I overdid myself this week and am paying for it. I thought yesterday was bad, but today is even worse. I feel like jello, too. I keep thinking it is time to take another Mestinon, and I still have a few more hours to wait.

I don't understand why I can feel good and be able to do lots of things one day and then feel bad up to one week later for it.

Nicky, I hope you re-write at least some of what you lost.

[Nicknerd]

Thanks, guys!

Boy, I was feeling like crap last night! lol

Chemar, sorry about the thread...It wasn't really a complaint re. the locking of the thread, but more the fact that my fingers were really weak because of the MG, and I didn't have the 'gas' to re-type my post...hehe

Good idea, Desert, re. the copying/pasting...I've thought of that before, but I always forget! I'm going to do that everytime now!

I've noticed that whenever my fingers are really weak, I also have major facial weakness, and my eyes wont stop tearing...Can't close my lips and eyelids tightly...Overall, I feel like I have the strength of a cloud...

Tyson, I was going to pretty much say what everyone else was saying...There was more, but I'm feeling sorta sleepy, so I will post it when I have more energy! SOrry, buddy! But most importantly, you be your best advocate...Make sure to get as much information about this disease as possible so that you knwo waht to ask your doctor, and feel secure/safe in the asnwers/treatment you're getting....I think that your doctor has the best of intentions, and is ordering the right tests (thyroid, etc). I hvge similar sx as you re. the heart. I feel pretty sure as to why I have them. I have Mitral valve prolapse and thyroid antibodies, and both can cause weird heart sensations. Maybe you can ask your doc. to order a test to check for those antibodies too. Since you and i both had a thymoma, it woudln't be unheard of for you to have these antibodies. Having MG majorly increases your chances of having the antibodies too...It also may be the prednisone and cellcept causing these symptoms. heart palps. are sides of both of these. I think that it would make a lot of sense if the meds. were ccausing these sx because of the timing of when they started...Try to trust your doc., and also be your advocate...It's prolly hard when you're as young as you are, but you gotta take care of yourself!

Nicky

[redtail]

I recently went to Perth to see family. I went up on the train, a 2 1/2 hour trip, then sat and waited at the train station to be picked up. I sat texting on my phone, and all my right hand would do was shake, my fingers wouldn't work well enough to be able to type at my regular speed. So there I sat giggling my head off, my right arm/hand/fingers doing this awsome shaking. 2 young guys sat off in the distance glancing at me occaisonly, all I could think was " do they think I have parkinsons, with all this shaking" pity I wasn't somewhere I could have made a milkshake!!!!!

I find that when I am really fatigued, if I try to force my hands to do something, they tend to shake, unless I'm typing then I go from fast touch typing, to a curled two finger type, which takes forever.......