[FrancisW]

Paul, You need a new team of doctors. If you are in CT – go to Dr. Jeffrey Dewey, Yale Medicine. Sincerely, John

[FrancisW]

I am late onset – age 63 – MG.  I’ve been taking Imuran for 1 year now.  No meaningful side effects – nothing I notice.  Takes a long time to impact MG.    Took 4 pills Imuran & 4 pills Mestinon in the beginning.  Plus added my own herbal supplements to reduce inflammation in my system.  Anyway, now down to 1 pill Mestinon every few days and 3 pill Imuran.   Although not in remission,  my quality  of life has improved considerably.   Good luck.

[FrancisW]

I believe that my “vaccines” caused or triggered my MG.  Had difficult reactions after 2nd dose.  I don’t believe that these “vaccines” should be allowed to be called that.  You can still get Covid and you can still transmit Covid even after receiving 2 original and 2 booster shots.  Thus they don’t meet the definition of a vaccine.  They should be called a shot just like the way we refer to the Flu shot.  Plus you must sign a peace of paper acknowledging that these drugs are all experimental and thus give up any rights to compensation or accountability on the part of government and the drug companies.  Yet society is being forced to do this.   I question that “greater good”.  It is really just for their political cover.   Just follow the money.  So in the end my side effect is I have to live with MG because a grand experiment forced on us all.

[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 published in early 2021 on Effects of thymectomy on late-onset non-thymomatus MG.  You should read the study.  Yale Hospital Drs. were not aware of study.  But conclusion “Thymectomy in late-onset NTMG also yielded no benefit to CSR or PR compared with conservative treatments”

I didn’t have the surgery.

Before treatment I could not hold my head up at times,  my right eye half shut,  speech and eating was a real  problem.

Now, I take Imuran, Mestinon, Ginger Root, Vitamin D, and Curcumin now.  I live a very normal day.

 

[FrancisW]

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 recommendation was to have surgery to remove my thymus. I did not. In the Orphanet Journal of Rare Diseases (2021) there is credible new research (I believe) that states that late onset non-thymus MG (NTMG) thymectomy yields no benefit versus conservative treatments. My Dr. and the surgeon was not aware of this research. I can send you the article. There are significant videos on use of Vitamin D to treat autoimmune diseases. So I started taking 15,000 IU per day. And I monitor my blood with tests. I brought my Vitamin D up to 150 ng. My Dr. suggested staying at 10,000 IU per day. There is also research that suggests the stomach plays a part in MG and the inflammatory cytokines may start in an stomach imbalance . So I added Ginger Root and Turmeric supplements. With Turmeric it was the Curcuminoids I was after. Turmeric 900 MG 4 times per day with 95% Curcuminoids. Turmeric I take to lower body inflammation. Ginger Root 550 MG 4 times daily. Ginger Root I take to improve my dygestion.

Presently, I only take 3 times daily Imuran (50 MG each) and 2 times daily Mestinon (60 MG each). I just had dinner with my wife. Had a glass of wine and a cocktail. I was able to eat and talk thru the whole meal. I expect to reduce the Mestinon to 1 times daily soon, or as my Dr. says only as needed.

There is hope ! If I can help let me know.

[FrancisW]

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.

[FrancisW]

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.

[FrancisW]

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

[FrancisW]

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. Although they continue to ask. I am not against going to see a GP when it is appropriate and necessary. But going to a GP when I know a specialist is needed seems like a waste of time and cost. We have centralized medical records on a national basis. Thus all my tests and medicines can be reviewed by any doctor I use. If a specialist doesn’t see a recent test they need to do an evaluation they will order it. So for me no I don’t wish to have a routine check in with a GP. By the way – I have a dentist, cardiologist, neurologist, dermatologist, otolaryngologist and ophthalmologist all taking care of me.

[FrancisW]

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.

[FrancisW]

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 it, I’d recommend a good dog to anyone with MG.

[FrancisW]

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.

[FrancisW]

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 add nutritional supplements to their diet ?

[FrancisW]

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 persistence is the greatest tool when life is no longer easy.

[FrancisW]

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

[FrancisW]

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 my thinking.  Yet as you know there is a fall scale war going on in my body.  I think staying positive is about yourself.  It gives me the determination to fight this daily war.  In not sharing my challenges with familiar others I am recognizing two things.  They won’t ever understand the shoes I walk in or the war going on inside me.  And secondly I am avoiding spending emotional energy on soothing them and their perhaps kind hearted daily reminders of my circumstances.

[FrancisW]

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 to help,  but I don’t have any scientific evidence or understanding as to why it does for me.

[FrancisW]

I don’t agree with your opinion or your stated facts.

Your facts omit some very important relevant details.  People have died from getting the “vaccine”.  People have died from Covid after being vaccinated.  The “vaccines” are not the only way to avoid Covid death.  No one with high (over 50 ng) of Vitamin D in blood stream has died from Covid.  There are and were many other choices that also worked with the same efficacy as the vaccines.  Over 90% of Covid deaths were elderly with pre-existing conditions.  Why is government scaring society into being stupid.  MNRA protein spike used in vaccines is according to one massive study in Sweden being attributed to causing DNA changes in people.   Why are we forcing large blocks of  very young children to get a “vaccine”.  Follow the money.

Please don’t misunderstand me.  I respect your opinion and your right to be wrong.  Be healthy.  Be well.

[FrancisW]

My Covid vaccines were in March.  I first had MG symptoms in April and was diagnosed with MG in June.  Can’t say for sure but I thing vaccines may have caused the MG, or at least brought it to the surface.

[FrancisW]

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 high doses of Vitamin D3.  I am monitoring D3 levels via a blood test done every 2 months.  I pray for you to find a workable solution.

[FrancisW]

Thank you –  so much !

[FrancisW]

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.

[FrancisW]

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