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 found this support group a few weeks ago.
Finally I found people who are going through similar difficulties.
I started having neck weakness and double vision the 3rd week in March. After two hospital stays I was diagnosed with Myasthenia in the beginning of April. I was put on prednisone,mestinon and I have IVIG every 3 weeks. Double vision is gone! Unfortunately I also had a mass on my thymus and had that removed in the middle of May. I am scheduled to start radiation treatments in about 10 days. I haven't read any posts about anyone with my additional problem. Very interested in hearing how radiation treatments have effected the Myasthenia.
I am recovery nicely from the surgery but I am having a great deal of discomfort holding my head up. Very hard to eat and do anything. I have not worked since March. I feel for everyone of you out there. I live in South Florida and have to trying to get into local support group.
I welcome any suggestions.
Marcy
I also have neck weakness (mine is extensor muscle weakness), and my MG doctor prescribed a Headmaster cervical collar. Supposedly the Headmaster is more supportive than a regular cervical collar. My neck weakness hasn't been so pronounced lately :-)) , so I haven't gotten around to buying this yet. You can purchase a Headmaster cervical collar online, even via Amazon, and my doctor wrote a prescription so that I could possibly be reimbursed by my medical insurer. If you do decide to try the Headmaster, be sure to measure per their instructions before ordering so that you will have the correct size.
- Nan
There have been posts in the past about MGers that had thymoma. I know that there is a search function in this site, but I’m not sure how it works.
There are many other MG groups online where you could ask about thymoma treatments. if you haven’t found them some of them are:
Mdjunctioncom
Neurotalkcom
Facebook - Myasthenia gravis Unmasked, Myasthenia gravis flakes, and a few others.
I hope you’re able to get to a local support group, it helps to speak to others in person, face to face.
There used to be a MG support group in Boynton beach, I’m not sure if it still meets. We have one here in Orlando that meets every other month.
Lisa
the easiest way to find former discussions about a topic on this forum is using what is called a google site search.
you type in the words you want to search and then prefix the site you want to search with site:
So this is the example (you can't click this link, but type it into the google search page)
radiation myasthenia site:www.dailystrength.org
(I am searching for the words radiation and myasthenia on the site www.dailystrength.org -- the syntax has to be as in my example -- the words you want to find. The word site is separated from the site by a colon. Note this kind of search works for any website and is very handy!!)
That search finds several discussions for the past 10 years on this topic. You can click the next link here and see the search results
https://www.google.com/search?q=radiation+myasthenia+site%3Awww.dailystrength.org&rlz=1C1CHBF_enUS812US812&oq=radiation+myasthenia+site%3Awww.dailystrength.org&aqs=chrome..69i57.18048j0j7&sourceid=chrome&ie=UTF-8
Hope you find some useful information
Good Luck
Russ
Marcy
Welcome to the group! I was diagnosed a year ago and I also have a painful problem with neck muscles overworking/weakness. I live in South Florida in the Naples area except for summers. I also was looking for a support group down by me with no luck. You can email me directly if you like at mgcyndi2019@gmail.com.
I would be interested to know where you go for treatment?
Good Luck to you,
Cyndi