NeuroTalk Support Groups - Re. Bulbar symptoms

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Yes! I have really weak neck muscles as well. CAn't sit for too long, or I'll feel like my head's dropping or my neck's hurting like crazy. Nowadays, i don't bother supporting with my arms as my arms are weak too. Lol. Sometimes I just lay back in my chair and lean my head back to rest on the back of the chair...

Quote:

Originally Posted by Nicknerd (Post 532597)

My neck is really weak as well as my chest muscles...Sometimes I wonder if that's why I'm having twitching in my fingers, mainly the left ones. Whenever I'm in a seated position at a desk, I lean on my elbows because I need to support my torse...That weakness started to get really pronounced when I had a viral infection about a year ago...I remember going back to work and not being able to sit upright for too long without feeling like my chest was caving in or something, or my torso was turning to jello. I started leaning on my elbows all the time, even while eating.

I now notice that I have seemingly permanent bruises on both elbows, but mainly the left from always supporting my weight with that one...I must have some kind of nerve damage (ulnar nerve maybe?). That, along with the TMJ makes me think that MG is a real safety hazard! I think there are probably a lot of secondary conditions that might come from the compensation we have to do in supporting the weak muscle groups.

Hey sweetheart! It sounds like you need some sort of boost! I haven't had my "nasal" voice since I started on the pred, but I do sometimes have nasal regurg........

I am so glad to hear you are having your thymectomy, cuz all of your sx's sound pretty serious to me. We all tend to downplay how awful and weak we feel - simply b/c sometimes there are no words to really explain it. All I do know is that you are always in my thougths and prayers. You are one tough cookie! I bet your thymectomy puts you into REMISSION!

Until then, really try and take it EZ - and I do mean EZ. If you are tired, please rest. Holding your chin down to swallow makes all the difference - isn';t it funny what we have all learned from MG?

Hang in there, sweetheart!
Love,
Erin:D

Quote:

Originally Posted by Nicknerd (Post 531722)

Hey guys,

Maurice--Right now, I'm only taking mestinon...My doctor hasn't attempted to prescribe prednisone to me, although I have a bit of an idea why she hasn't....I've been having plasma exchanges (going through 3rd set of treatment right now) and IViG once...I hope that the thymothymectomy will help. which I'm having in less than two weeks *going down roller coaster feeling* :eek: ekk!

Joan-- I do the same thing for swallowing (holding the chin down to my chest)

Here's another question...Do you guys find that you can't move certain facial muscles anymore, or it's really difficult to? I can't, for the life of me, roll my lower lip down...It's not really a big deal--I don't need to do it, really--but I wonder if some of the muscles just stop working if they've been weak for too long...I'm pretty sure that I stopped being able to do that a really long time ago, but because I didn't know that it was a symptom of a disease, and it was so subtle, I never told my doc. about it.

Do you know what I find miraculous, though? When I'm at my weakest, I can't elevate my tongue to touch my back right teeth...This will persist for weeks...Last time I had plasma, I was able to do it! It was so amazing!

Anyway, I'm so glad that I found this site...It's such a lifesaver to have people to relate to....Thanks guys :hug:

Nicky

Hey Erin,

Thank you so much for your kind, empathetic words! I really do appreciate your thoughtfulness!

After having my most recent plasma exchange, my voice is actually back to normal--miraculous! I'm ecstatic! But i have a bad reaction to my last treatment...My calcium got really low and, it's a long story how it happened, but my right hand and face went completely numb--I lost all feeling, and this was after I'd left the hospital! I was alone waiting for the bus and raced back to the hospital. They stabalized me, but it was scary, nonetheless!

I'm having my thymothymectomy in two days (tuesday), and the main thing I'm worried about is the tumour being malignant...Boy, I hope it's not! I have come to realize how bad my health has declined lately...When I saw my anethesiologist, he said that a vein on the right side of my neck is swollen, so the tumour's probably wrapped around some veins. He also noted that my BP is pretty different on each arm, probably explaining my chronically swollen fingers on my right hand...But oddly, I feel relieved that he noted these things, because they've been bothering my for years! I have some hope that they'll be taken care of once the evil tumour is removed!

One of the things that makes this experience especially terrible is that I don't have a lot of family support. Some family members downplay my situation and don't seem to understand how much I'm suffering, because they don't want to or don't care to. But everyone has their trials and tribulations. This one is mine. Hopefully, when I get better, that wont have to be something that makes me feel lonely or sad anymore, and I'll have the strength to stand on my own feet again, emotionally and physically.

Thanks for looking out for me, Erin! You are a very special person and hopefully, we all will get stronger and stay stronger!

Take care!

Nicky

Quote:

Originally Posted by erinhermes (Post 536159)

Hey Nicky,

I know you are going to come through the surgery just fine.:) I will be keeping you in my thoughts & prayers. While we can't be with you on Tuesday, we will all be with you in spirit. You take good care of yourself and we'll all be waiting to hear from you when you're feeling up to checking in. I'll be keeping good thoughts.;)

Big Hugs,
Pat

Hi Nicky!
I'm sure all of your neurotalk family will be with you with their positive thoughts and energy for you on Tuesday.

Sue

i hope your surgery goes well or went well. it's tough enough to be sick but without family and friends-i don't think strong to go it alone. BUT REMEMBER WE ARE ALL PRAYING FOR YOUR HEALTH TO IMPROVE.WE ARE THERE IN SPIRIT FOR YOU!!!!!:grouphug:

Good luck on Tue. Nicky, I'll be thinking of you. Hang on to the fact that most tumors on the thymus are benign. Mine was.

Hi sweetheart! Just checking in on you to see how you are........please take it ez after surgery...you will recover faster and feel so much better!:D I was sooooooo dumb after my surgery - I hosted a party for my niece 9 days after my surgery - as well as taking care of my family......what an idiot!

I'm going to be doing some serious praying for you! You are going to be just fine! After your surgery, you're going to feel like a CHAMP!

Love,
Erin:D

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