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...
My husband abruptly had symptoms of drooping eyelid & double vision one evening. Within a week the symptoms got worse - facial muscles affected - crooked smile, trouble chewing due to exhausted jaws & then loss of use with his tongue - & inability to speak - & it is very frightening.
He had an MRI - no thymus problem - no brain tumor, annyurism or stroke either. He was given pyridostigmine - that didn't work too well - he felt a lot stronger at first but he just crashed afterwards, & his symptoms seemed worse - & he is rock solid emotionally & very even keeled & after taking the pyridostigmine , he gets extremely emotional & on the verge of tears. We have tried it without pyridostigmine & he does not have the severe ups & downs - but the symptoms are getting too hard to handle - his doctor wants to put him on mestinon - which will be longer lasting . Any thoughts, shared experiences & hope & help & encouragement would be much appreciated. Thank you.
He had an MRI - no thymus problem - no brain tumor, annyurism or stroke either. He was given pyridostigmine - that didn't work too well - he felt a lot stronger at first but he just crashed afterwards, & his symptoms seemed worse - & he is rock solid emotionally & very even keeled & after taking the pyridostigmine , he gets extremely emotional & on the verge of tears. We have tried it without pyridostigmine & he does not have the severe ups & downs - but the symptoms are getting too hard to handle - his doctor wants to put him on mestinon - which will be longer lasting . Any thoughts, shared experiences & hope & help & encouragement would be much appreciated. Thank you.
Hope you find some relief soon.
Sounds a lot like I was last June--the double vision, drooping eyelids and then difficulty breathing with exertion and weaker and weaker.
Pyridostigmine (we here all use the simpler brand name -- Mestinon), helped me get through June-October. I had to take a lot of it, and it took a few weeks to get used to the side effects. But it made the difference from having to do very little and be somewhat functional. I took about 8-10 60mg pills per day. There are strategies to deal with the side effects--(most are digestive upset). I don't think I had emotional side effects from mestinon.
Mestinon just helps with the symptoms and doesn't stop our immune systems from pouring out antibodies that attack our nerve-muscle connection. You have to take something to suppress the immune system to really improve. I took prednisone for 10 months, started at 20mg and moved up to 60 mg over 2 months and then at 60 for a momth, and then tapered back down gradually. In 5 months, I no longer needed mestinon.
Prednisone has problems too, however it is probably the quickest way to get MG under control. Most folks start with prednisone, try to get MG into remission, and then switch long term to an alternative. The alternative drugs seem to take much longer to take effect, but probably are less problematic over the long term--MG for most folks lasts the rest of our lives.
Good Luck
When I got out of the hospital after an MG crisis, the doctor had put me on a very short prednisone taper. When I got to the lower doses of pred, I started feeling my tongue getting fat and I was slurring and losing control of it one day after lunch. They increased my prednisone a lot and said if I didn't regain control of it in an hour or if it got worse, to call 911.
I hope his symptoms become more manageable soon and he gets the treatment he needs from a neuromuscular specialist.
First things first recognize that you both will be on a roller coaster (lots of ups and downs). I think the best thing to do while you are trying to figure some of these things out is to try and minimize the symptoms and problems if possible.
Some things that increase MG symptoms for some of us:
- Too much heat; hot showers; Hawaii, Florida temperatures etc.
- Pushing too hard; when fatigue and MG symptoms start to set in it is easier to rest immediately and get some relief. If you go too far then try and rest it can take much longer to bounce back (so to speak). For me if I wait too long it can take days to bounce back.
- Over using his face and tongue by speaking etc. could cause his symptoms to continue for longer. Try something to help reduce use of those muscles. Wipe board and dry erase markers or flash cards, easy hand signals etc. Sign Language for yes and no are super simple or just create your own. Food items that require less chewing etc.
If you have a specific problem post it and see if someone has a suggestion.
I also recommend he find this or another site (with his own account) or someone impartial to speak with. You are wonderful. I can tell because you are here trying to help. But he will eventually need to express himself on his own. He will still need you and still need you to understand. Some of us have had difficulty learning to be more dependent on others. Even if the people assisting us don't feel burdened we can often feel frustration in requiring the help. I'm not saying this will be your case but there are lots of things like this that pop up from time to time.
This is a learning process. This is a good place to find folks that understand and to find work arounds and good questions to ask doctors etc. Just realize that it will take a some time.
Kimber
That is the first place to start.
the second thing that is a must....
YOU MUST GET A neurologist that has experience with MG. That is mandatory. This disease is way to complicated for just the best neurologist in town.
He has to go to a neuromuscular specialist who has many MG patients.
Trust me on this one.
I hope he is resting and getting treatment asap....you can read my profile. If you hesitate you can have problems.
Ann
There just isn't a simple solution for anyone with MG. We need treatment to improve and to get stable.
As mentioned, many people do go on to Prednisone, but not all. There are other ways to combat the disease, like IVIG. It can be very difficult to get off of steroids...
I started with Cellcept (an immunosuppresant) and got IVIG (you can do a search for IVIG) to push my MG back. By the time the effects of IVIG had worn off, Cellcept had started to aid me. However, I had to take A LOT of mestinon to fight off symptoms still because Cellcept can take over six months to really get going. This is where steroids can help the most. I had patience with Cellcept and my condition allowed me to be. Steroid sparing agents like Immunosuppresants can take awhile to really be effective, if it is to be effective for us. Sometimes up to two years...
Bottom line is, treatment is needed to get stable and time is required to let the treatments kick in. No matter how you go about it.
I wish you luck