Jonathan A

I started showing all the MG symptoms on 7-25-2019.   I was diagnosed correctly with Acute Ocular & Generalized MG on 3-25-2020, and left my 5th hospital,  after over 5 months on 11-27-2020 and have been in complete remission for the past 13 months, after spending 8 months searching for a diagnosis and only finding clueless,  improperly edu…[Read more]

It took me 8 long, weakening months to finally be diagnosed with acute ocular MG and generalized MG, on 3-24-2020.  But I have been in remission, since 11-27-2020, after spending over 5 months in 5 hospitals in 2020.  My last stay was at two hospitals in November.  My toasted immune system from all my meds  … could not protect me from a sep…[Read more]

I have had three MODERNA shots with the last one on Tuesday 12-28-2021.  I have had no problems, except a sore right bicep for a day on the last one.    I started having MG symptoms on 7-25-2019, was diagnosed 8 months later eventually on March 24, 2020.   My undiagnosed MG was so bad, with eye problems and weak muscles and swallowing that I went…[Read more]

I have had MG since diagnosed on 3-24-2020  … and have been taking MESTINON (3x 60 mgs daily) and CELLCEPT   (2 x 1000 mgs daily) only since then.  My nasty Steroid PREDNISONE was tapered and killed in November 2020  .. after horrid side effects of huge weight gain and high to the roof blood sugar readings.  I am in complete MG remission  … kn…[Read more]

It took me 8 months to finally be diagnosed with MG on 3-24-2020  … but it was by a floor nurse, who had patients that had all my symptoms.  Every doctor who saw me was uneducated neurologically  … including three Banner neurologists. In my case, I lost 43 pounds in the first 6 months,  searching for my disease.  If your doctor does not have…[Read more]

Some people get very imaginative when wrapping a gift, thinking outside the box.  It usually best shows up at holiday gift exchanges, bridal showers, or mom-to-be events.   It is amazing all the colorful things, that you can find cheap at Dollar Tree,   99 Cent stores, or Big Lots stores at bargain prices.

Depending on what size and type of g…[Read more]

I know exactly how you feel.  For 8 months, I was undiagnosed by every doctor who saw me.  I was correctly diagnosed by a floor nurse at the second hospital, who had patients who had my all my symptoms.  So it got to be impossible to raise my arms to string my clothesline or hang my wet clothes on it, or even trim low branches on a tree.  My arm…[Read more]

This is Jonathan.  I am still awake now at 1:54 am ..and reading this  … as I tried twice to fall asleep and could not.  I find that going to bed early does not make falling asleep quicker  … and getting to bed at 2 am makes it only a little faster falling asleep  …. so I am up trying to get sleepy.

I still taking Mestinon as well as 200o…[Read more]

Thank you for commenting about MG and your own situations that you had to go through.  WE LEARN FROM EACH OTHER…….  It took me 8 months to get a diagnosis. No doctor was ever able to diagnose my ACUTE OCULAR MG or my ACUTE GENERALIZED MG symptoms.  Finally, an intelligent floor nurse at the second hospital saved me and diagnosed me, and got me…[Read more]

Reply to Ella.  Since my MG diagnosis, I have found, bought, and read several good, first person accounts of their journey to an MG diagnosis.  All the books but one were excellent and double the price I paid for them.

One book is    ATTACKING MYASTHENIA GRAVIS  by Dr. Ronald Henderson.  He is an experienced baby physician, and started getti…[Read more]

It is really hard to know what to say about one’s medications.  All the doctors kept dumping things into my body, and you don’t know what it is, why you are getting it, and you are left totally clueless.  The doctors were all prescribing medications based on  … what diseases “older people” should have and were not listening to the MG symptoms I…[Read more]

Almost everyone that I have met, has absolutely no concept about what Myasthenia gravis is.

After 8 long months of suffering, doctor appointments, tests, eye issues, etc.  ….. I was finally diagnosed by an intelligent floor nurse, who listened, and recognized my 8 or 9 MG symptoms,  that every doctor was ignoring!!!   She had patients on her…[Read more]

It is hard to know if one can go back outside and play again.   Restrictions were losing up finally with the “PLAGUE from CHINA” but now the DELTA VARIANT  is closing places again.    On my way home after giving up 9 vials of fasting blood yesterday (three requests to SONORA LABS by three doctors), I was starving and stopped at WHATABURGER  … t…[Read more]

That MYASTHENIA GRAVIS problem hit me really hard  … and I could not attend the 50th reunion of my 1969 high school reunion in October 2019.   I had already paid to go  …. and at that point in time, I was taking each medical decline one day and hour at a time.  What was wrong with me.  I had NEVER been SICK.  I had never ever taken any pills…[Read more]

It took me 8 months to be diagnosed with MYASTHENIA GRAVIS on March 24th of 2020.  No doctor ever was able to diagnose my MG.   I was finally diagnosed by a intelligent floor nurse at the second hospital  …. who recognized all my symptoms from some of her other floor patients.  She got me tested, treated and on IVIG.   My Neurologist of record…[Read more]

Reply to Amy.   I was out running a few quick errands yesterday  …. as I had to pick up my replacement meds at FRYS Pharmacy.   I was not in the mood to cook dinner when I got home.  So I went to WHATABUGER.  The doors were locked  … only drive thru. I WANTED TO SIT AND EAT.   So I drove to MC DONALDS.   I got in the door. Everything…[Read more]

MYASTHENIA GRAVIS has really stopped all my fun  … but as I get farther away from my last MG Crisis, I am starting to relax a bit and start venturing out of my comfort zone.  I started showing MG eye issues, dropping eyelid problems,  quickly followed by weak arms and  fingers, legs wanting to melt,  and a neck that would weaken and dump my head…[Read more]

My MYASTHENIA GRAVIS symptoms first appeared a little over two years ago on July 25. 2019.   For EIGHT LONG MONTHS,  ………      no doctor was ever able to diagnose my MG. Finally a floor nurse at ST. Joseph’s hospital recognized all my MG symptoms and got me treated.   So ever since I got my freedom and out of the five hospitals    …..   …[Read more]

Thanks to everyone  .. who has been replying about IVIG treatments and how it goes.    My veins are hard to poke  ……   as well     …..   as nurses have trouble  finding a vein.  So you need really trained people to get to your blood.      At the third of five hospitals last year  ……  I had so many blood draws and IV’s in both arms  ……[Read more]

I too received ACUTE RESPIRATORY FAILURE and a  COLLAPSED RIGHT LUNG also.  I already had all the undiagnosed Ocular MG and Generalized MG symptoms.  So after 8 months of no diagnosis, I went to a BANNER HOSPITAL URGENT CARE CENTER for a diagnosis.

But the doctors … including three consulting NEUROLOGISTS  … could not diagnose MG.  My brea…[Read more]