Does anyone have a really nasal voice that just wont go back to normal despite treatments? Also, does anyone have nasal regurgitation?

Hi nicknerd,
Yes I did with a bunch of other symptoms mostly at the beginning of my MG before I got dx and treated (Mestinon+ steroids). Nasal regurgitation was about OK with water, but with orange juice, coffee or wine, it was awful, I found the worst was with chocolate…!
Besides the treatment, I learned to sip beverages (preferably with a straw) and swallow with my chin at about 2 inches from my chest.
What kind of treament do you have and since how long?
Maurice.

Nicknerd,

The nasal voice is when my family realizes that my MG is "flairing up" and the fluids coming out of my nose when I drink is when I know it is time to go to bed and rest. It being summer time remember that heat is MG'ers enemy so stay cool if you can.

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* 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

Nicky

OMG @ the lip thing, I thought it was just me! See when I was DXed 18 years ago they said twitching and pain and many of the things I have was not MG related, but after finding this site I see they are, you all are life savers because I thought maybe I "was" crazy, LOL. but I see now that the Dr's just didn't know enough about MG.

Again yes, Nicknerd, at the beginning, it was difficult for me to drink, not only to swallow, but just to put my lips on the glass without dripping...
Maurice.

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

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