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've got some questions for those of you with generalized MG.
I have just seen my local neurologist that I haven't seen since early 2012 when I was Ocular only. She still has me labeled suspect ocular, in fact. In spite of what my expert neuro in Chicago and my far-from-home neuro here in Italy say, she doesn't want to consider diagnosing me with anything. Anyway, I recently saw her because my breathing is just not right and to have someone local who is aware of the situation. I've not had any more double vision since early 2012 and haven't taken mestinon since then either. I've been choking on everything though and then not able to breath very well after these episodes. After one episode of what she called aspiration, my left lung hurt for 4 days and left me with a nasty cough.
Anyway, she has ordered a visit with a phoniatrics specialist as well as some other visits and exams related to the MS (which she also denies). She kept mentioning progression of "the disease" but wrote down, no signs of a neuromuscular plaque disease.
What I'd like to verify is this. She told me that if MG affects the swallowing, it also interferes with all of the muscles in the throat, jaw, and mouth together. She says it's a single mechanism that can only be affected as a group. Do you find that to be true?
She is the MG specialist in our area, but has told me a number of things that have made other doctors choke on their surprise or outright laugh. :/
Sorry this is so long and thanks in advance for any advice.
I have just seen my local neurologist that I haven't seen since early 2012 when I was Ocular only. She still has me labeled suspect ocular, in fact. In spite of what my expert neuro in Chicago and my far-from-home neuro here in Italy say, she doesn't want to consider diagnosing me with anything. Anyway, I recently saw her because my breathing is just not right and to have someone local who is aware of the situation. I've not had any more double vision since early 2012 and haven't taken mestinon since then either. I've been choking on everything though and then not able to breath very well after these episodes. After one episode of what she called aspiration, my left lung hurt for 4 days and left me with a nasty cough.
Anyway, she has ordered a visit with a phoniatrics specialist as well as some other visits and exams related to the MS (which she also denies). She kept mentioning progression of "the disease" but wrote down, no signs of a neuromuscular plaque disease.
What I'd like to verify is this. She told me that if MG affects the swallowing, it also interferes with all of the muscles in the throat, jaw, and mouth together. She says it's a single mechanism that can only be affected as a group. Do you find that to be true?
She is the MG specialist in our area, but has told me a number of things that have made other doctors choke on their surprise or outright laugh. :/
Sorry this is so long and thanks in advance for any advice.
Hope this helps and I hope you do well.
can you get another prescription of Mestinon to see if that resolves your swallowing problem? that seems like an easy test that your neuro could do.
Vieve, i have been unable to whistle at times and my voice does go completely hoarse sometimes as well, but these haven't happened recently and have not occurred along with the choking and breathing difficulties. When I'm tired, my breathing gets slow and/or shallow as well as sounding shakey, like a kid that's been crying for an hour but is calming down (make sense?... I never know how to describe this). I have also had times where I had a hard time exhaling. The choking is the worst though.
These symptoms have been few and far between for me since being diagnosed with MG (by another neuro). I was diagnosed with MS around the same time and I'm still trying to sort out what's what and trying not to get overwhelmed.
Should I be concerned about this enough to make the trip to see my far away neuro or should I wait this out? Ms. Local-Neuro did say if I end up with aspiration pneumonia we should have another talk, but that scares me that she isn't interested in helping unless things take a turn for the worst.
Thanks for reading and for sharing your experiences. Best to you both xx
Maybe you need more testing, to get things straightened out? Are you AChR positive, the antibody blood test?
With these symptoms you are describing? It sounds like you might benefit from being back on a Mestinon prescription.
The symptoms you describe, what you and the local Neuro are talking about, they're all bulbar symptoms. They do, often appear together, but it is not unusual for one or two of the symptoms, to be much more predominant. So when you are having problems swallowing, or breathing? Well it's not always easy to notice lesser symptoms.
Plus with MG or any Neuro problem, there is a wide-ranging level of symptoms, from person to person.
Anytime there is trouble breathing, any trouble swallowing, or when there are problems with aspiration? This is not to be taken lightly, and maybe you should see the local Neuro soon, for some Rx.
Mestinon? Prednisone? Maybe other treatment?
Local Neuros, vs. Big City Neuros. A similar thing happened to me.
After two years, my Local Neuro actually referred me to the Big City Neuro, 110 miles away, and that has made all the difference.
In my case, the Big City Neuro had access to a more sophisticated and comprehensive testing lab, and that Big City hospital clinic was a regional referral, for New England, having much more experience with rarer Neuro diseases.
The best my Local Neuro could do for me, was phoniatrics and EMG testing. The phoniatrics helped a little. Very little. The EMG testing gave me a diagnosis of no MG, which is almost hilarious, given the MG that developed. If phoniatrics and EMG is the best that the Local Neuro can do for you, you may need to insist on referral and treatment, with the BIg City Neuro again.
I'm not saying all the Neuro experts are in big cities. But local Neuros are limited by testing facilities, and they also don't see a lot of rare problems like MG. My Big City Neuro sees many MG patients every week, people with a wide range of symptoms. On a more local level, a Neuro may see a MG patient, only several times a month. It's not their fault, it's just a reality.
It's not easy, being in this place, having these symptoms, wondering about doctors and their diagnoses.
Keep a close watch on the symptoms, don't let them get worse.
If they get worse, call the local Neuro, and consider going to the ER.
Keep us posted, we're all going through this together. Shared experiences can help, I've gotten a lot of help here.
When I was tested in 2011 I was seronegative. At that time, the only symptoms I had that looked like MG were ocular (ptosis and an eye that went where it wanted). In fact, I seriously doubted the ocular MG diagnosis for awhile since double vision can be a symptom of MS too and I had 10 other MS symptoms.
When I started to have arm weakness and intention tremors, I chalked that up to MS too, although I suppose that could go either way. My legs were going out on me randomly but they tend to tingle and burn, too... I also have a neurogenic bladder.. ?? All of these technically can be MS related, too. Considering I'm relapsing remitting MS, it's very unlikely that I have bulbar symptoms at this point.
I'm in the exact situation that you described with local neuro. She can offer EMG and phoniatrics. While reading my paperwork from far-neuro I should have a SFEMG but she doesn't have access to that equipment.
Thanks very much for your encouraging post. I am trying to learn as much about all of this as I can and you've all been very helpful.
Best to you all xx