FrancisW

I was diagnosed with MG about 9 months ago.  Have late on-set non-thymomatous MG.  Age 62.  Male.  Initial recommendation was get evaluated for surgery.  My thymus showed no signs of cancer.  But I qualified as good candidate for surgery which was recommended.

Read an research article in Orphanet Journal of Rare Diseases.  Research study publis…[Read more]

I am male 62 years old diagnosed 1 year ago. I could not keep my right eye open or keep my head upright. Sometimes having labored breathing. One alcohol wine drink would make it impossible to talk and difficult to swallow. Found a good Dr. I was put on Imuran and Mestinon. 4 times per day each. I have non-thymus MG. Nevertheless the…[Read more]

I’ve noticed that my computer glasses give off more glare on Zoom video than my uncoated glasses. I’ve also noticed that the higher the camera the better or less glare I get.

I work from home, but have been doing so for more than 20 years. With MG even that has changed. Can’t use the same normal chair as in the past. Also find myself taking frequent short naps. An air conditioner and dehumidifier are always present and often used.

My own experience is not a direct answer to you. But maybe something in it will be helpful.  My wife an RN told me to stay off Prednisone.  She has patients that have terrible problems due to long term use Prednisone.  So as a result I take Mestinon and Azathioprine as drugs.  I also take high doses of Ginger and Turmeric tablets as well as hig…[Read more]

Thank you –  so much !

Interesting.  Thanks  for sharing.  Do you also take Prednisone ?   Presently,  I am not.

Wow.  Thanks for the observations.  I feel like I’m looking in the mirror when I read your flare conditions.  I need to learn not to fight it – MG –  but make appropriate adjustments.

Personally, for the past 20 years I didn’t use a primary care doctor. Then MG presented itself about 8 months ago. It used to be a hassle trying to get an appointment with a specialist without a primary care specialist. Now medicine seems to have changed in my area of the country. It now seems ok that I don’t have a primary care doctor.…[Read more]

Alcohol is a definite problem. Any amount beyond a sip causes my MG symptoms to immediately appear. Recently, I have turned to trying some alcohol free beer. Not a fan yet, because pre MG my preference was always wine. Oh well.

As a long time owner of dogs, I fully appreciate the calming effect of an animal that bonds to you. There is little they won’t do for you. The love is real and without conditions. Mine will crawl into bed with me when I can move any more. And then she will just lay there next to me waiting for movement. If you can and your lifestyle supports…[Read more]

Has anyone experimented with Vitamin D3 supplementation ?

I see only 1 study on the subject that highlights the need for good levels – https://pubmed.ncbi.nlm.nih.gov/22672742/ talks about fatigue.

Personally I took a blood test to get my current level and am considering pushing that level up by 50% thru supplementation.

I am trying to add some supplements to my diet. Presently added Turmeric which contains Curcumin. There are lots of discussions about the anti inflammatory aspect of Curcumin in the Multiple Sclerosis world. Anyway, been taking it for about 1 week 3 times daily. Seems to be helpful. But maybe that’s just my hope talking. Anyway, does anyone…[Read more]

I too find my energy for living has changed dramatically.  I won’t preach God stuff to you.  But never loose hope.  In my opinion the doctors don’t know it all.  I am researching everything and anything to see how to improve my quality of life.  I too have had to reset all my priorities and redirect my limited energy.  Keep trying I believe persi…[Read more]

Thomas I am reviewing the research on Thymectomy for my own situation.  It sounds like your symptoms were pretty severe !   Do you know what was your MG classification e.g.  I, IIA, IIB etc. ?   Will you tell me your age when you had the onset of MG and your age when you had the Thymectomy?   Thank you,  John

Hi Ian,  I’ve been thinking that in part MG is aggravated by an inflamed body chemistry  and that diet can help.  I am interested in your use of the Keto Diet.  Are there any resources such as books or websites that you can share with me.  Much appreciated.  John

I recently told only some in my family that I have an autoimmune disease.  My wife knows it all of course.  Anyway I withheld from family and adult children, grandchildren the specifics including the name – Myasthenia Gravis.  My thinking is I don’t want my relationships to be defined by a disease.   I will not let a victim mentality creep into…[Read more]

I usual put ear plugs in.  Make the room dark.  Set my clock timer for 30 minutes.  Try to take a full cat nap.  This may happen 2 to 4 times per day.  On the theory that my body is constantly going thru a workout of sorts,  I also take 1 dose of Post Workout Sports Critical Amino Acids with 8 ounces of water maybe 1 to 3 times per day.  Seems…[Read more]