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'm new to this group but not new to MG. Don't know if my story and natural remedys will help any of you but it's worth a try. I was diagnosed in 1985. I've been through plasmapheresis, thymectomy, high doses of prednisone, mestinon regimen, etc. At one low point I could hold a pen long enough to sign my name but not make out the rest of the check; could not click a mouse button twice fast enough to open a program; had trouble being able to pull a brush through my hair and been on a respirator because I wasn't strong enough to breathe on my own. But since early 2006 I've been basically symptom and medication free. I tried numerous remedies with no significant changes until I tried going gluten free at the end of 2005. In two weeks I felt better with less aching. In 6 weeks my droopy eye opened up and stayed that way. Within 3 months my double vision left. I was able to gradually wean myself off prednisone in 9 months (that was the toughest part). I tested myself by eating a little something with gluten and every time my body would know it within an hour. I also have eliminated as many toxins from my world as I can by eating organic and using natural products to clean my house. During times of stress I can still feel MG creep into my eyes and swallowing but I've learned to recognize it and go straight to bed for plenty of rest. My neurologist has continued to brushed off my discovery and accomplishment as nothing and not worth anyone else trying. But I want to shout it from the rooftops. My husband says he got his wife back and supports me with a gluten free kitchen. Wish I could guarantee gluten free will work for you, it's worth a try. Once you learn to maneuver the gluten free world you'll never go back.
The difficulty in knowing what helps and what doesn't is that we can go in and out of remission, and we have MG at all sorts of levels from quite mild ocular levels to extremely debilitating levels and these levels change with time for each of us. For most of us standard immune suppression is needed.
In attributing the cause of our improvement we risk the confusion of saying something caused us to go into remission when actually it may just be a coincidence and we were going to go into remission whatever we did.
My remission came after I gained 20 lbs (one of the side effects of prednisone). Should I tell everyone to gain 20 lbs?
My neighbor attributed getting through cancer to prayers from her friends and to the magic water she bought at a high cost. That she went through chemo, surgery and radiation for over a year and still takes monthly maintenance chemo doesn't seem to register at all in her view of how "she" cured herself.
MG can kill us. We are in danger if we don't listen to our doctors and get treatment. About 40% of those with MG died in the first couple of years before modern treatments, and eventually MG killed most all of them. Not something to ignore. Search the internet on these two terms Myasthenia, obituary and see how many folks still die with MG.
MaryMiami - an idea for you, I have a friend who drinks dark cherry juice that she says helps her arthritis. She drinks about 8 oz. a day. I read you blog, thanks for sharing.
Hey, and another shout to those that are NOT Celiac, but suspect they have a Gluten problem (or, like me, have KNOWN for decades I have a severe intolerance but test negative for Celiac antibody). Anyway, Non-Celiac Gluten Sensitivity is a known issue and can be serious. See Mayor Clinic article re: Gluten and neurological symptoms (also known as gluten ataxia...chronic exposure to gluten can cause permanent cerebral damage for a small number of people when their immune system, I stead of attacking their intestines attacks other organs, in this case, the cerebellum and nervous system.
MAS:
For me, autoimmune diseases progressed like this: first I had NCGS (probably since birth), then Reynauds in late teens (no need for treatment), then Hashimoto's thyroiditis at 53, with excruciating, severe idiopathic frozen shoulder (spontaneous adhesions /scarring of the shoulder capsule, in my case, I could not touch my nose or touch my opposite hip) and start of MG symptoms. I did not recognize the subtle droop of eye, my state of exhaustion, or two weeks of difficulty breathing. All 3 illnesses began within 90 days of each other. 9 months later, when my eyelid dropped further and dramatically, I received my initial, tentative diagnosis.
I have since discovered the recent info on Multiple, Autoimmune Disease Syndrome (MAS).
Anyway, I'm posting for those that are thinking they're losing their mind with new, crazy symptoms that don't fit MG, or are ignoring them. Don't. It may be something simple (like hypothyroid) that is VERY important to treat, that has a BIG impact on MG as well as mental health (depression), or in the case if gluten, may actually trigger MG events or, I suspect, lead to my system turning its attack to my muscle's neural receptors and trigger the MG disease itself. That pesky thymus is just like a confused Mr. Magoo, running a defective 3D printer printing off antibody fellows....just hoping I slowed the printer down by resting, calming my diet down and de-stressing my daily life.
Mellow on, MG Dudes and Dudettes!