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 posted this elsewhere in error.
in the spring of 2019 after the onset of a 3 month issue with double vision I was diagnosed as possibly having MG. All the tests at the time were negative but I had two more double vision upsets that year, both about 6 weeks each. Coincidentally it was discovered that I had high blood calcium for the 5 years prior due to what is called a hyper parathyroid condition. After some osteoporosis was confirmed as a result I was had surgery on March 13, 2020 which resulted in the removal of two of the four parathyroid glands. After surgery I was told to take 3,000mg/day of calcium for a month, 2,000mg/day for the second month, and finally settle at 1,000mg day which is the recommended daily allowance. I was also told to take 1,000 units of vitamin D3/day during and ongoing which is required for calcium absorption.
Now, this is where it gets interesting...5 days after I dropped to 1,000mg of calcium the Myasthenia hit me like an atom bomb and I landed in the ER because I couldn't breathe. I was then put on MESTINON, which helped but I struggled the rest of the summer and landed in the hospital for five days because I couldn't swallow. All during this I looked back and thought . "What changed." . The obvious answer was my blood calcium level. I looked at my test record and my total blood calcium had dropped about 15% in that period when the crap hit the fan. All during this I was asking all the neurologists I saw, including my ongoing one, and all thought it was interesting, but that was it. I even went to Mayo where an expert who's seen "thousands" of MG patients spent 90 minutes with my wife and I and he listened but I could tell he didn't believe the connection I had made. I pointed out the sudden drop in calcium was the ONLY thing that change before the blowup...but?? He said the only thing predictable about MG is its unpredictability.He also commented "we know people have these crisis, but we don't know what causes them". At the time I thought I think I do. Also, just before the Mayo visitvfor the first time I tested positive for the MG antibody.
December 1st, 2020 I saw my neurologist and I told her that everyone thinks I'm crazy and she handed me a piece of paper and said "I don't think you're crazy". It was the cover sheet from an online article she had researched in JAMA (Journal of the American Medical Asso) from 1969 titled "Role of Calcium in Myasthenia Gravis " . In the article summary it stated "six of ten MG patients reported feeling stronger after being injected with Calcium" I then went online nosing around using different keywords and found another article dated 1970 that stated "the decreased calcium has an adverse effect on skeletal muscle function especially in patients with myasthenia gravis".
Now, if you look up why calcium is necessary it states besides building bone, it is necessary for muscle contraction and improves the nerve muscle connection. At the time I thought, that sounds like the description for MESTINON.
So, with the knowledge and agreement of my neurologist and endocrinologist, who monitors my blood calcium I went back up to 2, 000MG/day. It took 5-7 days but I feel wonderful. I'm back on the treadmill walking a mile or more a day, and doing light weight upper body exercises. I'm taking 400mg of calcium citrate in the morning, at noon, and after supper which gives me a base of 1,200 mg/day. You then need to go in to the cupboard and refrigerator and start reading labels for their calcium content..it's in literally almost everything, milk (I'm a big skim drinker), an ounce of cheese yields 250mg, almonds, fortified cereal, almond, almond milk etc. I add or subtract the calcium tablets to get as close to 2,000 as possible. Oh, and check your multivitamins...mine has both calcium and the required D3.
NOW...Do not do this without checking with your doctor. Calcium can cause kidney stones and even heart issues in some cases.
As I went down this road I kept thinking how this is a perfect example of Occams Razor, which is the theory the most often the simplest solution to a problem is the correct one.
I think we all with MG have a"threshold " for calcium that if you go below it, MG comes roaring in like throwing a bucket of gas on a smoldering fire. I know mine is above 1,000 mg/day, and below 2,000 mg/day. I don't think a temporary daily dip below whatever that number is will cause a problem and hasn't with me, but if it's consistently lower you're in trouble....
if you want further info or to chat email me at calciumguy36@gmail.com
good luck
Cheesehead
TJ
I just can’t find any downside to trying this.
Good luck.
Cheesehead
Which brings up a thought...does anyone reading these posts know of anyone who often gets kidney stones, which are caused by abnormally high calcium , to have MG?
Cheesehead
Oh and one glass of wine... My vision goes off the charts..
My calcium was blessed by my neurologist and endocrinologist and I feel much stronger
Good luck
Cheesehead