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...
So I've posted on here quite a few times. I had odd vision issues (not really consistent with MG) distorted/wavy in both eyes and I have had numerous docs looks at me. 3 eye docs, 2 MRIs, 2 ENT Specialists, Evoked Potentials for eyes, ears, and limbs and TONS of blood work. Only thing coming back is MG abnormally elevated. I have been struggling with extreme anxiety/depression lately. My balance is a little off as well, and I get small bouts of vertigo when I bend my neck over like I'm putting my head down on a school desk. Tinnitus is noticeable louder and I am hyper sensitive to some noises. I have tried Mestinon and Prednisone and haven't had much luck ( I am on low doses). So I think this has really been a reality check for me with my MG. For the past several years my symptoms have been mild and I have been lucky. I think my MG has finally started to show me the severity of this disease. What bothers me is that there are a lot of symptoms that are not referenced as typical, however, after speaking with people and researching online, I have found that there are other symptoms caused by Myasthenia Gravis. For example, with the eyes, the common issue is double/blurred vision or a drooping eyelid, but there is another condition called Hippus, which are muscles that control the pupil to contract (not extraocular) that have known to be affected in people with MG. The hyperacusis can be becaue of weakened ear muscles (this is also not mentioned as a symptom). I see people often complain of "brain fog" which makes me wonder if MG effects our cognitive ability. What scares me is that at 27 I wonder if I just have a course that is progressively getting worse. It's a viscious cycle of trying to be healthy mentally and physically, because both effect each other. This has been a major reality check for me. My fiance has been with me for 6 years and we were together when I was first diagnosed. I am now having trouble with having enough stamina to go and do things we used to do. Going out with friends is hard, because I am so tired all of the time. She's used to the old me that could play beach volleyball all day, and go party afterwards. I know only I can work on communicating my concerns but I really don't think she really "gets it" when I tell her about how tired I am and about the depression I am going through. I know it's not fair for her to have to stay home and I never want to hold her back in anyways but I wish she was more educated on these issues. I've tried to talk to her about researching these issues online and I even offered to have her come to a counseling session with a doctor that understands neurological conditions and she was open to that. I don't know. I guess this is one of the many reality checks we get sometimes.
I had a clear diagnosis of MG (antibody positive) so the neuro and I plowed directly into prednisone and just kept increasing it over many months until my symptoms came under control. I had to be at 60 mg per day for a month or more (after having started at 20 and moved up to 60 over several months).
With MG, the problem is our immune system churning out many bad antibodies and control comes from shutting the immune system down enough to either stop (rare) or at least greatly diminish the production to let our neuromuscular junctions repair themselves.
MG out of control really means the production of bad antibodies is too high and the attack ongoing. The theory of control is very simple--shut production down. The complication is that means shutting down our immune system and leaving us susceptible to everything else. That leaves us with attempting to balance the two along with minimizing side effects from the treatment (prednisone usually).
My strategy: Take lots of prednisone until MG goes away or I have too many prednisone problems. Then, with MG symptoms out of the way, taper prednisone slowly until the MG symptoms start to come back, and then stop--or increase prednisone.
If the doc is unsure of an MG diagnosis, then she may be tentative about giving much prednisone, which of course means it won't work to get MG under control. I got the tentative approach at first as my doc was sure I would be pushed into diabetes with very much prednisone. However, I made the decision that MG was worse than diabetes and insisted I would move up until MG was under control.
With a diabetic diet, I didn't end up with diabetes, and MG got under control last November. It didn't come back for me with the tapering and now I am almost 100 days MG free and MG drug free. I don't know why MG hasn't come back yet, but I give credit to the high doses of prednisone for driving it away and making my life tenable even with prednisone side effects. I was willing to continue with prednisone to keep MG away had it been necessary.
Good Luck
- Sending strong, positive vibes your way! Hang in there!
You sound like you have a good understanding of your symptoms. It took me a long time - to understand even the basics of MG. (... and one of the things about MG? ... there is so much yet - to be understood ... but there is progress being reported, all the time.)
Will things get worse? Maybe.
Will things get better? Maybe.
It's the nature of the beast.
Think of MG - as a series of proverbial ''brick walls''.
You can't run through them; they will smash you flat, every time (thank you, Curt - for the phrase-ology).
However:
You - can - climb over the walls.
You - can - run around the ends.
And in between - the series of brick walls? There can be long periods of time. Maybe, just maybe? One day, you will clear a brick wall - and not see another one, anywhere in sight.
One key thing for me: was to finally become the patient of a Neurologist, who successfully works with MG patients every week. (... this took several years, and also took 3 tries ...)
Hang in there, get some counseling if you feel the need.
I had - over a year of counseling, which helped a great deal. (... a lot of the counseling, that helped the most? - involved my personal relationships ...) - Ross
That's wonderful she has agreed to go to the neurologist appt. with you. That makes her a part of the team it takes to fight your MG.
We are now part of your team too! So many on here have invaluable information. In fact I am very intrigued about the other symptoms of MG. that you mentioned.
~Marina