[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 Ultomiris combined with Mestinon as I taper from 60mg Prednisone.

Next Monday I go back to work and even though I’m OK to work, I’m terrified.  Stress seems to make me show symptoms fast and that is the only thing I have not tested over these past few months.

Most the stories I read people are old and in pretty bad shape both with MG and with their personal fitness and diet.  I’m really hoping that because I’m oy 43 and was in general fit shape I can manage this.

Any engineers out there who have had to change careers?  I SURE HOPE I DONT HAVE TO.  I don’t know ow what I would be able to do.  I’m so used to this high stress high Reward job.

[Joe B]

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 up was caused by reducing my corticosteroids too quickly thinking the IVIG was enough.  This is dangerous.  Now on Ultomiris for 2 month with miraculous results.  The pressure on the chest and sweating is a symptom of the steroids more than the MG.  Overall dirty gross feeling hard to explain unless you are one of us.  Not like the common weakness of MG.

[Joe B]

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 difference. Alcohol has been a no go since onset last year.

 

I recently tried magic mushrooms on multiple occasions which actually relieve my symptoms for those few hours.  It’s been a nice escape but you can only do then so often, as it’s a little more of a commitment than a quick toke.  But seriously I think there is something there with the Physicybin and opening new neurons.

 

[Joe B]

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 in appeals to no avail. I have a good insurance but they say there are other methods to treat my disease. Any suggestions would be appreciated.

[Joe B]

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 long-term steroid use. Slowly decreased for 2 months to zero and went to IVIG once per month. Now mild head discomfort and overall tired at end of day. Otherwise normal. Whole time Dr.s mission was to get of steroids. Its the easy way to get life back quick but comes with other dirty burdens.

[Joe B]

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 often joke about what tragedy Murphy would hit me with. when this happened I have surprised myself how positive I have remained.

The first few months before I was diagnosed and medication started working was a real struggle. My first inability to physically take a breath happened after sex and it was terrifying. I thought Iwas going to die. My wife got up to go to the bathroom and I just layed there unable to breath. Thats when we knew we had to change things up.

Communication is key and being comfortable with each other and yourselves is key to experimenting.

Medication has gotten me back to 80% and we added some more spice in other ways. At first she was hesitant of toys but now are part of the play book. Mornings are out of the question because i never recover for work.

This is way out there but we also added some magic mushrooms a few times and that has been an incredible bonding moment, not just in the bedroom. And we were not the type to try such a thing before.

Bottom line, if sex is important to you, there are so many ways to keep it that way.

[Joe B]

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.

 

[Joe B]

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

[Joe B]

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.

[Joe B]

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.

[Joe B]

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 to the gym and realized while warming up that I had lost all strength in my chest and shoulders.  By the end of the day I was slurring and my head and neck felt like 100 lb weight was pulling it down.  My symptoms progressed to where my diaphragm was being affected and breathing became difficult.  Two weeks later after blood work, CAT scan and MRI results concluded MG.  I will not be getting a booster.  I’ll never know if the jab gave me this terrible disease or not but it did wake it up.  Unfortunately the medical field now looks at us as collateral damage to the cause and are willing to look away, hopefully not forever.

[Joe B]

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.