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...
I have been having trouble with tired heavy eyes for more than a year and a half. I have seen my eye doc 3 times in 2 years but my prescription has not changed, she thought it was because of the computer and cell phone.
I have also had an issue for nearly a year with feeling like there was something stuck in my throat. It would feel like work to swallow, and I have commented several times that it "feels like I have a lump in my throat." I have had a few instances of feeling like it was work to chew, but chalked it up to being a vegetarian and figured I needed to work my jaw more.
I have degenerative disc disease so I tend to write off all my aches and tiredness as back problems. But I have been having trouble with my arms, upper back, neck and hands. It has been hard to hold my cell phone, write, put on eyeliner, drive. My arms just feel heavy and my fingers dont feel like they are working quite right. My forearms don’t feel like they have enough strength to make my hands and fingers do the things I need them to. My neck has been so tired, and after a few hrs teaching yoga or working at the computer, my head feels to heavy to hold up. I ended up in the ER tuesday after I was having trouble with my arm, not being able to hold a pen or zip up my purse and I also had a heavy feeling when I would breath that has been going on for a little over a week worsen. The ER thought I was having a stroke or possible heart attack and didn’t want to listen to anything else I was saying. The er doc came in after a few hrs waiting for test to confim I didn’t have a blood clot or heart attack and I told him I couldn’t lift my arms and legs. They just felt too heavy to lift. He started listening and after asking questions about swallowing and my eyes that I didn’t thik were related did an ice test and noticed it improved my ability to open my eye that he tested with the ice, briefly.
They ordered an CT scan MRI and a bunch of blood tests and ended up admitting me to the ICU. After about 12 hrs I stated to improve although my body just feels exhausted. I met with the neurologist who didn’t want to listen to anything I said. She pretty much just read the notes from the er that thought I was possibly having a heart attack, blood clot or stroke. She pretty much dismissed the possibility of Myasthenia Gravis (something I had not even heard of until Tuesday) and when she asked about my vision, throat, she said maybe, but that it didn’t present this way.
I was discharged once I demonstrated I could eat, walk, do stairs on my own, and only spend a day and a half in the hospital fortunately. I have not heard back about any of the tests, only that they were in keeping with my degenerative disk dx and that they didn’t show any lesions, thymus tumor, heart or lung problems. Blood test are expected back in a week or so.
Can anyone shed any light on their process of being dx? The only information I can find online seems to be all the same. I have a follow up with a different Neurologist and a referral to do a nerve conduction panel. But any information anyone can share would be greatly appreciated. I am feeling better then I did in the ER but symptoms are still here. Head, neck, arms, eyes still feel so tired and heavy and I am feeling discouraged.
Many of us have bad stories of how our diagnosis was missed, sometimes for years as doctors don't think about MG as it is very rare.
My early symptoms were eyes -- double vision and one eye kept going shut. My eye doctor did the "ice pack test." He put an ice pack on my eyes for about two minutes and when he took it off for a few minutes both eye lids stayed open fine.
Then he ordered a blood test for MG (ACHR) which came back positive. That meant that my immune system was making antibodies that attacked the connection between my nerves and my muscles making the communication poor. Treatment for me was prednisone to slow down my immune system making the problem antibodies and in a few months I was feeling almost normal again. MG treatment works for most of us, but as MG is not curable, just treatable, we have to continue treatment most of our lives (there are cases of remission).
MG is different than other conditions in that we still have muscles that work,but when we use them they tire very quickly. One of the tests for MG is actually seeing if the muscles work and then tire more rapidly than a normal person's. My doctor would say - grab my hands and try to pull against mine -- and for maybe 10-20 seconds I could equal his strength, but then mine gave out while he was still pulling normally. The test done in the clinic is a single fiber emg, and it essentially tests how quickly a muscle tires.
Another way of helping to decide if MG is the problem, is to take a pyridostigimine (brand name Mestinon) pill. For most of us with MG, 30 minutes or so after taking the pill we feel stronger for then next few hours and then it wears off. Mestinon improves the nerve to muscle communication temporarily.. As it almost only works for folks with MG, a clear improvement with a pill is a strong pointer to MG.
Hope you don't have MG. However, if you do, most of us come to the diagnosis in rough shape, have several more months with problems, get our immune system suppressed and then get back to living OK. Some have more problems, but most figure out treatment and get a decent life back.
Good Luck
Russ (diagnosed in 2012)
Sorry to hear you are having so many problems. Several discussions here in the past have covered Rituxan/Rituximab for refractory MG. Part of the difficulty is in getting it paid for by insurance, but Rituxan does seem to be fast acting and successful for many folks as well as much less inconvenient to use. Cellcept and Azathioprine (Imuran) are standards for treatment and do work well for many folks, but take months to a year or more to become effective.
You can find out what has previously been discussed here with a google site search. When I search on Ritux myasthenia we find this list of discussions
https://www.google.com/search?safe=strict&rlz=1C1CHBF_enUS812US812&sxsrf=ACYBGNRl0B_rwtQg40wTds5Jh5QOPJWJWg%3A1570715622249&ei=5jefXbbgDsO-tQWSzpTQBw&q=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&oq=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&gs_l=psy-ab.3...25156.39239..39988...0.0..0.165.1765.16j4......0....1..gws-wiz.hI-7bHFOqiM&ved=0ahUKEwi269PV65HlAhVDX60KHRInBXoQ4dUDCAs&uact=5
A site search has the syntax ritux myasthenia site:https://www.dailystrength.org/ where you type in the search words followed by the word site:________________ with the web site. It is much better than the search you can do in dailysearch itself.
By the way, if you create your own post on this subject you will get more response rather than commenting on a post on a different topic
My own reading of several years of posts on Rituxan seems to show it is used in refractory (hard to treat) folks and has been pretty successful. It would seem to be worth trying. The FDA won't approve it until many research studies are done in treating MG. That may not happen soon. One study you can read shows positive results.
With musk MG, treatments that work for ACHR MG may not work the same or may not work at all.
Here is a research result https://myastheniagravisnews.com/2018/05/29/myasthenia-gravis-rituxan-improves-muscle-strength-long-term-data/
Remember, if you have musk, you need to try to read what treatments work of that variation of MG
Good Luck
Russ