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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Symptoms or Drug Interaction?

Julie_E
Julie_E

Hello.  I was diagnosed a year ago with MG and am taking Mestinon and Prednisone. I sometimes have blurred vision along with muscle weakness in my face, neck, arms and legs.  I have trouble swallowing and forming my words on occasion.  I do not have dropping eyelids but my journey started a few years ago when I was driving to work and had double vision with a rainbow effect.  ER doc said I had dysplopia.  WRONG.  Anyway, I'm just wondering if anyone else experiences a feeling of numb/tingling face around the time your next Mestinon dose is scheduled.  Also wondering if feeling tired seems to worsen when the weather changes....  


I was doing great over the summer and was working my FT job and then coming home and working in the yard.  Felt really "normal".  But now I'm back to barely making it through the work week and have had to take a couple afternoons off the last couple weeks.  Thus, I'm back to being concerned about having to explore disability.  My meds have not changed so I can't figure this out.  I don't live near a support group so I've not been able to connect with anyone else with MG.  My neurologist is not much help on this front since he doesn't have MG and each person's experience is different.  Thank you for your comments.  

Quen1966
Quen1966
am currently taking 10 mg of prednisone daily and 90 mg of mestinon 4 days a day. My double vision and droopy eye lid is slowly clearing up but comes back when my mestinon wears off. I will be starting 20 mg of prednisone on Monday 10/31/2016 and Imuran in two weeks. I walk with a limp, move very slow and have constant muscle pain and weakness in the trunk of my body, pain in my lower back, thighs and buttock area when my mestinon wears off. . I am currently walking with a cane for balance and once the mestinon wears off I have trouble walking up the stairs in my home and start to become weak again. I am progressing but it seems to be a slow process. Please continue to communicate through Daily Strength I found it to be a mental life safer for me when I was first dx in Sept 2016. So yes, the tingling may be the mestinon wearing off. I found that I have a dry constant cough with my Mestinon, but still need it to function. So finding our balance, how much to take and when it the trick. Good Luck and stay in contact !!!
Rhanson
Rhanson
It would appear that you need to take mestinon more often. I took it every 2.5 hours when MG was severe. It also means your MG is getting worse if you need more mestinon. All of this should be told to your neuro -- they need to know if the treatment plan is not working. We really have to stay on top of our symptoms and keep our neuro tightly in the loop.
Good Luck
flutebell
flutebell
Have you been to a GP lately? I get weaker at this time of year when my Vitamin D levels drop. I also am very sensitive to slightly low potassium levels or when my thyroid dose needs increasing. My family doc says "You certainly walk a narrow line!"
Flutebell
HappyGuy007
HappyGuy007
Hi Julie_E, May 17' will mark my 3rd anniversary as a MGer. I have been lucky in that I have been able to do well without having to take immunosuppressants. I take only Mestinon, and plenty of Vit. D3., 10K iu/day. At my last visit to my neuro, a few days ago, he said that I showed no signs of MG. Of course, I still have MG. I can't do without Mestinon... 60mg every 5-6 hrs. Still, even with Mestinon I am never without the sensation of slight numbness in my face, notably, in my cheeks around my mouth. Cold, or very warm temps exacerbate this sensation. When we weaken, we must first think infection. Do we have one? An infection will cause our symptoms to flare up. Stress, as well as pushing ourselves too hard can also cause symptoms to become more severe. We must make some compromises. It is very important to make sure you are not deficient in Vit. D. The internet is awash in information concerning autoimmune disease and Vit. D. It is clear from this info that adequate Vit. D levels are of crucial importance for those with AI diseases. Best Wishes, HG007
Julie_E
Julie_E
Thanks SO much for your input. Very helpful. None of the literature I've found mentions the facial tingling so I just wasn't sure what that was. And thanks for bringing up the Vitamin D issue. Several years ago my family doctor prescribed that for me and I did feel better after taking that. Of course, that was before my MG diagnosis. I have an appt with my neuro next week and thanks to you I know what I need to be sure to tell him.
HappyGuy007
HappyGuy007
Julie_E, Here you will find a great deal of must read materials for those with AI disease. Please peruse the autoimmune section thoroughly, and be sure to pay special attention to the interviews with Dr. Coimbra. ...http://www.vitamindwiki.com/Myasthenia+gravis+score+improved+38+percent+with+just+800+IU+of+vitamin+D+daily+%E2%80%93+Dec+2012
J_Allen87
J_Allen87
Hi,
I get the tingling and weird feeling all the time in my facewhen my symptoms start to creep- its also this weird feeling in my jaw muscles, like its gone for a major workout and cant move anymore. I am recently diagnosed in Sept 2016-only on Mestonin currently. The neuro just upped my mestonin because my symptoms were getting worse and needs me fully optimized for the surgery (happening in Jan- thymectomy). I am going to be getting IVIG treatments before it as well.
Trying to take lots of Vit D as well and B vitamins (I suffer from bad anxiety/depression). - that does seem to help. Also this website was really interesting about shakes to drink for it (helps with inflammation- http://eattobeatmyastheniagravis.com/blog/healthy-living/what-is-clean-eating/
PM if you ever want to chat.
xo Jade
AbegailS
AbegailS
I absolutely love this website. The Smoothies Recipe are easy to do and really gives me the energy I need to go on with my work day! I hope it works for you too!
cindy990
cindy990
My Nero didn't know much about MG until me. about my third visit he was very educated. hope yours does the same.. I was diagnosed July 2015.
robt111
robt111
Re: numb/tingling face when next dose of Mestinon.
I too. However, my previous Neuro said it was not numbness; it was muscle weakness. Anyway, sometimes I feel the "numbness" even before the next dose is due so I take it then and it helps within 20 minutes.