Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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bear57 10/09/2013

Since the first of Sept. I have been feeling different part is my voice sounds weak at times and sometimes I can barely get a word out at the end of the day. Also I cough for no reason and if I get to laughing or trying to breath hard will cough and it is difficult to breath. I do the count test and I get to 15 used to be 30. Just was wanting to put this out there if anyone else had these experiences and what may be next. Bad thing about my voice though they call me Bear for a reason I don't talk much anymore just give mean looks from behind my beard just kidding. Thanks

txkiki53 10/09/2013

Yes I get the same when mg is not playing nice. Meds and rest.... When do u have treatment again? Please be careful!
Annette

bear57 10/09/2013

I go on the 23rd to see a new Neurologist and the local University. He wanted to look everything over again and put me back on prednisone which I don't like at all and I don't think it is helping nothing but helping me not to sleep and other things. I am watching trust me some days it gets really interesting all the things that go on.

txkiki53 10/09/2013

So agree we all are one a roller coaster ride. Called MG. I try hard to take each day as it comes but wow dome days are hard!
If u have to call to see if u can get in sooner
Annette

annkemp 10/09/2013

my neuro says
breathe or prednisone?
I have had throat issues this year too. weird.
Allergies I think. I think the coughing stained my throat muscles which MG kicked in.
It went on for 2 weeks with nice overnight (2) in the hospital.
Would have preferred the Hilton....but oh well

Sleep with head higher...that helped me.

annkemp 10/09/2013

Mestinon helped a lot
don't forget it.
You may need inhaler.....saved my life....my throat closed.....get to your doc BEAR

bear57 10/09/2013

OH Doctors are funny you call leave a message and two weeks later I still haven't heard from anyone. I will just wait till I see him I'm not mad or nothing just after two years what are they going to do about it another pill. I have been just going thru my day and coming home that is better than a doctor visit.

deleted_user 10/09/2013

Some of that sounds like asthma, which steroids would help. Everyone here takes prednisone, but I found methylprednisolone easier on me with more dosing options. It is less hard on the kidneys, too, according to one of my doctors.

snowbeltfolkie 10/10/2013

I hereby make you:
an honorary member of -
''The FCA-LAMS''!

(... First-Class Agitators of Lazy-Ass Medical Staff'' ...)

You are now free - to call your doctor anytime AND everytime - you feel the need.
You are also free to continue to call, every 5-minutes if necessary - to get the answers you need.

I'm the President of the Maine Chapter!
- Ross
(... can you tell? my wife has been waiting 2 and 1/2-weeks, for the answer to a basic question ...)

joefnh 10/10/2013

actually Bear one of my first symptoms was that my voice would give out for no reason at all. That amongts a few oter symptoms came and went for about 7 months before my MG decided t kick into high gear and affect everything it seems.

I remember I was giving a tour in December 12' of one of the labs I manage and was talking to abut 5 upper management types and within 3 minutes I could barely speak at all. This happened a few other times. My neuro considered that one of the classic symptoms of MG that is more generalized.

Joe

txkiki53 10/10/2013

So agree Joe, The more I talk the more my voice goes.

bear57 10/10/2013

Well Ross I liked that gave me a smile on that one. I am going to get me a T-Shirt with that on it and wear it to the Hospital the next time I go. I may get another one and substitute the LMAS with WIFE.

Joe thanks that is what I wanted to hear things have been feeling different lately and that was just one of them. Now I can watch for other things to happen hopefully they won't but who knows gives me something to look foreword to. I like a good mystery.
Thank you all! or how we say it here in KY Thanks Y'ALL

SeattleWriter 10/10/2013

The longer I talk, the quieter and weaker my voice. (Which is quite challenging when I give lectures and presentations!) That, along with swallowing difficulty and breathing difficulty, was one of my first MG symptoms.

The coughing, however, sounds a lot like asthma. If you're taking Mestinon, you may find that asthma symptoms are made even worse, as Mestinon increases irritating bronchial secretions. You should probably get checked out for asthma, as an albuterol inhaler can work wonders for those coughing issue.

deleted_user 10/10/2013

thank you so much everyone for your posts!It is all in my throat I keep trying to clear it like I have some obstruction in there. Because I COPD too I thought it was mucus but my voice goes and gets breathless and also when I have trouble breathing it's my throat!! you guys helped me to solve what's going on. Thank you! Thank you!

newmugg 10/11/2013

Keep in contact with your doctor Bear. They sometimes don't get the message or get busy and forget you called. Remember that you are your best advocate. Call, call call!
Watch the voice and the feeling of a lump in your throats. Bulbar weakness and breathlessness needs to be watched carefully.

Hugs
Sherry

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