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Re. Bulbar symptoms

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Unread 06-30-2009, 08:46 PM   #1
Nicknerd
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Default Re. Bulbar symptoms

Does anyone have a really nasal voice that just wont go back to normal despite treatments? Also, does anyone have nasal regurgitation?
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Unread 07-01-2009, 07:41 AM   #2
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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.
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Unread 07-01-2009, 09:41 AM   #3
Joanmarie63
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Teeth

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.
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Unread 07-01-2009, 02:52 PM   #4
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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
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Unread 07-02-2009, 09:30 AM   #5
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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.
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Unread 07-02-2009, 10:18 AM   #6
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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.
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Unread 07-02-2009, 10:19 AM   #7
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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.
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Unread 07-02-2009, 11:04 PM   #8
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Default Hi Nicknerd

I, too, am having a lot of problems with my voice (a new thing for me). At it's worst, I lose my voice almost entirely. After working way too much for quite a while, I completely crashed the first of April, not able to walk, speak above a whisper, breathe, etc. It was rough. I am finally getting better although still not able to work, walk through a store, etc. However, now at the first sign of weakness, my voice goes. Plus, my voice still doesn't sound normal even when I'm at my best. This is all with aggressive treatment. It's very frustrating!! In another post, someone asked about a sore neck, too. My neck muscles are also extremely weak and my neck gets so sore when I get tired! It's all due to the MG according to my Neuro doc and my general doc. I am sure about it, too. It does get better with rest and with Mestinon - it just doesn't last.
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Unread 07-02-2009, 11:49 PM   #9
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I don't have voice problems, but I do get a thick feeling with my tongue. I slur my words and sound like I am drunk. I feel like I am talking with a mouth full of thick oatmeal.

My neck always bothers me, that was one of my first symptoms. I feel like I always want to crack it, but I can't.
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Unread 07-03-2009, 01:16 PM   #10
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Default Me too, Trish

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.
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nasal regurgitation, nasal voice, weak palate, weak pharyngeal muscles

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