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...
Hello,
I'm new and this is my first post. I was diagnosed with MG a few weeks ago but after reading up on it, I decided I didn't really want that, lol, and I stopped taking my mestinon. And now at 4pm, I am so weak I feel like I could slide right out of this chair to the floor. I don't know what's worse, the weakness or the realization that the MG diagnosis is likely correct.
It's weird my legs feel so heavy, like their numb but I can feel them when poked with a pin.
My eyelid that had shown some improvement over the last few days, is now drooping mid eye again. My cheeks are heavy and my face looks "blank" again. Smiling takes effort and my jaw feels tried like I've been chewing old gum for hours or something.
I guess if I didn't have MG than the mestinon wouldn't improve these symptoms? What happens if someone without MG takes it?
I just can't believe it and keep thinking there must be some other explanation I'm missing. (as if my high school biology class can out smart the neurologist)
guess this is normal.
I'm new and this is my first post. I was diagnosed with MG a few weeks ago but after reading up on it, I decided I didn't really want that, lol, and I stopped taking my mestinon. And now at 4pm, I am so weak I feel like I could slide right out of this chair to the floor. I don't know what's worse, the weakness or the realization that the MG diagnosis is likely correct.
It's weird my legs feel so heavy, like their numb but I can feel them when poked with a pin.
My eyelid that had shown some improvement over the last few days, is now drooping mid eye again. My cheeks are heavy and my face looks "blank" again. Smiling takes effort and my jaw feels tried like I've been chewing old gum for hours or something.
I guess if I didn't have MG than the mestinon wouldn't improve these symptoms? What happens if someone without MG takes it?
I just can't believe it and keep thinking there must be some other explanation I'm missing. (as if my high school biology class can out smart the neurologist)
guess this is normal.
Please stick close to this group and you will find great support.
It sounds like the Mestinon improved your symptoms. I missed taking my doses on time the other day and boy could I feel the difference.
Best wishes to you!
I see the neurologist again in a few weeks and he said he would go over all the medications options. He prescribed the mestinon to treat my droopy eyelid and vision problems. It seems like the side effects from these meds aren't really a delight either.
This is all so new and confusing. I get up daily at 5am and walk 2-3 miles on a treadmill. Yet at 4pm I can barely walk down the hall from my office. It just doesn't make sense. It doesn't seem to matter that I have a desk job, around late afternoon I feel like I can barely move or hold my head up. Like most, I had never heard of MG. During the dx process MS was suspected. Does anyone know if mestinon would be used for MS?
Glad you are feeling better..
M
Like Maureen, I too am new to the group and only my Dx a couple of months ago. From what I read, I think that I was pretty lucky in my Dx, not that being Dx'd with MG is lucky. but lucky in the sense that from the first droopy eye to full diagnosis was only 6 weeks.
As others have said, the disease is different in all of us and as such so are the treatment plans. For me it is Mestinon and IVIg and that just gets me standing up.
None of us want this disease, but with a good neuro that you can actually talk to it can be managed. I had a thymectomy three weeks ago, I'm still trying to figure out why as I am seronegative, but anyway its done.
What I found very helpful was a book call "You, Me & Myasthenia Gravis" you can order it online. An excellent read and will give you and your family an awesome understanding of the disease.
The author is Deborah Cavel-Greant. If you can't find it online, get it touch with me and I will get it.
Final note, keep a quick daily journal, note the changes in your symptoms and talk to your neuro about them at each visit.
Take your mestinon its good for you!
Best wishes
Richard.
Deep down inside I am still in denial and it has been a year and a half for me!
Keep taking that Mestinon. I learned the hard way with a couple of bad falls (I too have the 'heavy' legs) and I always take my mestinon on time now. It is my understanding that if Mestinon helps, you have MG.
When first diagnosed I bought the book that Richard mentions and found it very helpful in understanding the disease.
Good luck and best wishes Elle.
Claire
I also know I should feel lucky that I don't have it worse and it was dx fairly quickly, only a matter of few months. I had a droopy eyelid happen once before about a year ago, but kind of funny I thought maybe it had to do with botox that I had done a month before the droopy eyelid. Guess that is good, since I didn't do the botox again, lol.
Glad I've found somewhere to talk to people about this. Really appreciate the support!
Stay positive! You picked the best chronic disease! Just stay cool and calm and go to the doctor a few times a week for the first few months. Lucky for us there is a good treatment available, and we do quite well on it. Now you need to look at your thymus!
~Joe
Yes I think I am lucky when I hear of the months and months of testing that some had to go through. Honestly I think I likely had this for years also but passed off the fatigue as stress etc. and likely drank another cup of coffee or something. In hindsight, for years I drank tons of caffeine & energy drinks to get through the day. At one point (2 yrs ago) I was drinking those 5 hr energy shots twice a day plus regular caffeine drinks throughout the day.
I don't know if related but many years ago whenever I would use eyedrops in my eyes, one would open wide and the other looked droopy. I had that "Spock" kind of look. lol. My kids thought it was so funny. I seem to wonder about all those things now. Not that it matters.
I see my neuro in a week. He said he would go over MG in more detail and medications etc. I've read prednisone is used a lot, but I looked up some of the side affects and wow seems a little scary. What are the most common issues that effect MGer's with it?
Welcome to the group. I think everyone of us have had to hit the denial phase. It takes time for the neurologist to hit the formula that works for you. Mestinon works for most all. I had trouble at first because it is so hard on stomach for me. The group gave me their formula for getting around the stomach. Take with food and/or Imodium.
I am currently pretty stable with mestinon, ivig, cyclosporine. Prayer and a positive attitude helps most of all.
Good luck, we stand together. Dee