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...
My Primary is in the process of re-evaluating my BP Meds! So far the process is going slow, but maybe I'm expecting too much too soon! I'm trying to be patient.
I'm going to have to bring Restless Leg Syndrome up with my Primary too. Seems like I can never string more than 2 1/2 - 3 hours of Sleep before cramping or legs wake me up!
Thank you for your comments and support, they are very helpful!
"I would also like to discuss options for getting another IVIG Infusion Treatment. My symptoms have gotten progressively worse over the last three weeks". He never responded to that request, so I have been at odds about what to do. My frustration led me to this space, to look for answers!
You have been very helpful, thank you!
sorry to hear your troubles with your legs, i had the same troubles and being with various heavy problems such osteoparesis, have gone thru cortisone shots 3 times afte which i stopped because they where useless, i would sugest that you talk to youe doctor and chech this .
i was so bad in relations to crample in my legs/feet/arms, hand that tha osteo doctor wanted to operate my hand to make them funcional, which i categoricaly refused,
locally a friend of my wife told het about a natural product and that i should try it, so i did it
it is called yaluronic acid/ clueberries/ took one spon dayli and afert 7 to 1 days miracle of miracles i started to feel that every part of my body was starting to work properly, so i dig deep in the net, find out that the product is
SUPER COLLAGEN and after a couple of weeks all pain had dissapear was full fonctional hands/fingers/arms/shoulders/feet/legs/knees/et
the product is made by NEOCELL 1 ounces/liquid 1 table spoon dayli , the cost is 22 bucks and beleive me it works/ its like having a bottle of oil to make the engine work
this was one year ago, talk to your doctor and dont be afraid of this product
it may or may not work for you i say that because will are all different en response of taking drugs/ect.... but belive me you do not loose anything as i hve told my problems which are like yours and free of them. you be the judge
also want to tell that i am olmost 84yrs old, and life get funnyer as we get older
best of luck
Andre
it should read 7 to 10 days also the bottle carry 16 ounces
thank
Thank you so much for that information I will check this out Neocell tomorrow, I’m happy this product worked for you and it gives me hope that I might have similar results.
Much appreciated!
BillB
Sorry to hear you are having so many problems.
How much mestinon are you taking?
Most of my leg cramps were from Mestinon. There are some folks who have allergic reactions to mestinon so that is one of the possiblities it is really bad for them.
When I first got MG in 2012, I took a lot of mestinon and had some horrible leg, calf and foot cramps at night. I did some pushups against the wall to stretch my leg muscles before going to bed and that helped some. I also quit taking mestinon after 5 pm and that helped too.
When prednisone started working I could cut way back on mestinon, just used it occasionally, and my leg cramps were gone.
I didn't have swelling or the weakness. Too much mestinon can cause weakness too. '
My doctor prescribed mestinon to be taken "as needed." That meant some days I didn't take any and others up to 6 tablets. I used them to give me strength when I needed to do physical things and if I had trouble breathing and otherwise took a few as I could get by on.
I got MG at 65 and then within 2 years my MG went into remission so now have been symptom free and med free for 8 years.
Good Luck
Russ
I’m currently taking Mestinon 3Xs a day (20 MG Tab) and an Extended Release Tan at night (180 MG Tab) before bed.
I did a small trial of with holding the ER Tab at night for a 10 Day Trial, it had little impact in reducing my leg cramping., so I’m back on ER at night,
I hadn’t thought of developing Allergy toward the Mestinon, Meds, but I will discuss
Thank you for your advice!
I read this on the internet "Tonic water is a soft drink containing quinine, which gives it a bitter taste. Quinine is a common treatment for malaria. Some people believe that it can also help with leg cramps and restless legs syndrome. Quinine comes from the bark of the cinchona tree."
It is certainly worth a try for those having leg cramps. Thanks for the suggestion.
Russ