Jonathan A

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]

I have been only in MG remission for a little over a year ….. but you seem to get Medication side effects  .. then have to recheck & google to see what is causing you problems.   I take so far Pyridostigmine 3 times 60 mg and Cellcept/Mycophenolate 2 times  1000 mg.    Had been taking Prednisone  3 times 20 mg  … but that steroid is NASTY …[Read more]

I was undiagnosed with MG by every doctor who saw me  (I was finally diagnosed by a floor nurse whose patients also had all my symptoms).  I finally got to  the MG swallowing problems … as one of my last undiagnosed MG symptoms.   So  I bit my lip, cancelled my CIGNA appointment, and went directly to URGENT CARE at a nearby Banner Hospital to fi…[Read more]

THANKS FOR ALL THAT YOU ARE TALKING ABOUT  … REGARDING IVIG.

These discussions give me much needed information about other patient’s experiences with IVIG treatment.   It took me 8 months to be diagnosed, put on meds, and be given 5 days of IVIG treatments initially.  I realized that IVIGs must be DANGEROUS … as the first time it happened to…[Read more]

I was undiagnosed for 8 months  …. and kept getting weaker and weaker in my leg calfs  … especially when out in my yard trying to trim roses or water.   I had already “melted into the floor” inside my house  …. then slid down the door sill to the floor, then laid down to rest on carpet till had strength to crawl to a chair or sofa arm to g…[Read more]

You guys seem to be very lucky.  You have found out what tests they did to you. I was undiagnosed with general MYASTHENIA GRAVIS  … starting with hand and calf leg weakness first along with all the Ocular MG symptoms.  The doctors in the hospital did not tell me anything, rarely saw them (usually if at all  ….   6am walking out the door on a…[Read more]

You are extremely LUCKY for a quick diagnosis. It took me 8 months and finally a floor nurse diagnosed me  …. and the next day they started me on 5 days of IVIG treatment.

My CIGNA doctors were TOTALLY CLUELESS and could not diagnose my MYASTHENIA GRAVIS  … so CIGNA figured  … oh the patient forms says he is old  …. he must have an old…[Read more]

Be lucky that you are only on 1000 mg of CELLCEPT.    I am on 200o mg of CELLCEPT  as well as some MESTINON.    My MG seems in remission  … and all my symptoms are gone except fatigue and sore biceps  …. but I have SEVERE ONSET INSOMNIA.  It takes me hours to fall asleep. I thought that once I got off the PREDNISONE that caused my INSOMNI…[Read more]

When I first started showing MG symptoms  … I went straight to the doctors  .. for answers as the symptoms kept increasing  … with hand finger grabbing weakness, sore weak calf leg muscles, and every street light at night  …. being a “CHRISTMAS STAR” off a Christmas card sending twenty foot rays to light down in front of the road.   So I tri…[Read more]

I also read about adverse effects of medications.   I usually try to print out the article  … but I have so many papers now to go searching thru.   I started on Melatonin because somewhere I read that another drug I was taking may negate the release of my body’s Melatonin into my body in the evening before sleep.   So I was trying to take a Mela…[Read more]