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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I just cannot seem to get my chewing back

august1s
august1s

I cannot seem to get my chewing back.  Ive been diangosed with MG April 2015 living a great life with very mild symptoms.  Back then I was only on 10 mg of prednisone.  October 2017 the droopy eyelid and difficulty chewing returned along with some new symptoms, very fatigue in the morning and slurred speech on and off.  My cheecks felt stiff and painful today.  My doctor has me taking 60 mg every four hours, but i take it every three hours because I really need it for the chewing.  I want to get up each morning and eat breakfast without struggling with chewing, i want to eat grapes in the middle of the day naturally like i use to.   It doesnt seem like the mestinon and predinisone is helping with my chewing.  My doctor told me to call him if the prednisone worsens my symtpoms, he said this is likely to happen since i was on prednisone before. HELP WHAT SHOULD I DO?







wskimball
wskimball
Hey August, sorry to hear you are having some difficulty again. One would hope that once MG goes into remission it would stay, but we all know that is not what this disease does. I am sure there is a blood test in your future to see where your antibody levels are. You asked what should I do, well what can you do. I think you should listen to your doctor if you have faith in him/her. Then you should get as much rest as possible because we know that the fatigue and stress are things that cause flareups. Hope things get better soon and this is just a bump in the road. Keep writing.
august1s
august1s
Thanks Wskimball my doctor told me MG is not for punks I will beat this even when its bumpy. Have a blessed one.
Rhanson
Rhanson
Everything with MG treatment using immune system suppressants is in slow motion. The problem is that our blood becomes filled with bad antibodies; prednisone works reasonably fast to stop production of them (maybe weeks or so), but the old ones are still circulating and it appears they stay around for months.
The only really fast treatments are IVIG or PLEX.

IVIG swamps our blood with huge quantities of antibodies from other people that seems to stop our own bad ones from attacking for a few weeks.

PLEX filters antibodies out of the blood stream so the attack is stopped immediately too. Most of the time IVIG and PLEX are used as an emergency treatment to give us time for our prednisone or other drug to work

My neuro said that IVIG or PLEX would speed up the whole process, but I chose to just wait a few months rather than tie myself to several days of in-hospital treatment every month or so until prednisone worked. I used a lot of mestinon during that time -- sometimes a pill every 2 hours if I really needed to be active.
Good Luck Russ
august1s
august1s
Omg Rhanson
This was super helpful. Yes I will give it some time. I just miss eating all the delicious food my cooking
Rhanson
Rhanson
Soft Jello through a straw can be tasty ;-)