Joe B

I spent 15 years building a career in construction working on mega multimillion dollar projects.  Get promoted to Sr Project Manager and this hits me like a ton of bricks.  In one year I hVe been hospitalized twice and now spent 3 months on disability.  Last month I could not chew, breath, walk, wipe, etc.

I have had miraculous results with Ulto…[Read more]

<p style=”text-align: center;”>Jane,  what brand supplement do you use.  There are so many out there.  Thanks.</p>

43 Male.  Diagnosed 1 year ago.  All the same breathing issues you all describe.  Just pulling out of an exacerbation that lasted 3 months where I was forced to take leave from work.  Hospitalized in July for shortness of breath, especially at night when in bed.  Spend a month sitting up at night in chair.  Definitely the MG.

Also,  my flare…[Read more]

I have been a regular pot smoker for 25 years.  Have had MG for 1 year (Covid Shot).  After feeling like I had my symptoms managable for 9 month I am currently experiencing a severe exacerbation.  Barely able walk, chew, type, brush teeth, etc.  I was also having major breathing difficulties.  I stopped smoking the weed and have noticed a big diff…[Read more]

Thank you, so simple that i have not challeged the insurance to provide an option. Cellcept and Azathioprine arent good options due to my diverticulitis and my high risk for infection. Most other IV treatments seem to be more than my IVIG so its surprising they are being so tough.

Not exactly the topic but…i was on 60 MG of Prednisone and i take a 60 MG Mestinone every 4 hours. Developed diverticulitis and Dr needed to get me off the steroids so went to an IVIG every three weeks. I was able to get of Prednisone fully adter 4 months. My insurance has denied every infusion and the bills are stacking up. Our Dr has sent…[Read more]

My first symptoms became life threatening within two weeks so first visit to a neurologist and i was diagnosed. First few days started Mestinon 60/4hrs and 20/day prednisone. Symptoms got worse. Increased to 40/day prednisone. Getting worse. Increased to 60/day. Symptoms start to decrease. 4 months later most my symptoms are from the…[Read more]

Would suggest editing profile to not include last name so discussion can be open without anxiety. I wouldnt want my personal info tied to a cronic disease site regardless. Posts are forever.

I had my first MG symptoms only this October and went from perfectly healthy to not being able to speak, chew, hold my head and arms up, and obviously have sex. Im 42 and my wife and I had/have a very active sex life. Of all the changes that have taken place, this topic was my most concerning. The past few years life seemed so good I would…[Read more]

Nope,

Just the pfizer Covid shot.

In the hospital now for Diverticulitis.

-Zofran

-piperacillin (zosyn)

-hydromorphone ( dilaudid)

Strong stuff but no issues with MG.

Good post,  this disease definitely one the patient needs to know more than the average Dr.  Besides the Neurologists most just cover us for a day in Med School.  Too uncommon.

I received the Pfizer shots in October.  The first shot was a sore arm.  The second shot was severe flue like tired symptoms.  Couldn’t walk far, hold head up, with fever.  Lasted about a day.  Three weeks after the second shot I experienced my first ever MG symptoms.  Eating lunch I had difficulty chewing swallowing.  The next morning I went t…[Read more]

My experience is exactly like yours.  Started in October 3 weeks after 2nd dose.  Can’t chew or speak.  Progressed to arms chest and worst diaphragm.