Goals for the New Year

[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 educated doctors.  I was finally diagnosed by a floor nurse at my second hospital.  She was very intelligent and immediately recognized by MG symptoms,  from other patients she interacted with.

 

Now that I have a name for my disease, finally, I am:

Googling the hell out of “MG”, and getting as much info on MG, the 12 medications I take, and their side effects,  so I can be my “own, informed medical Quarterback”, bringing my other doctors up to speed and informed,  so that I WILL NEVER   fall out of remission  …. with an MG CRISIS,  and land back in two more cold hospital rooms at hospitals #4 and #5 from November 5th through Thanksgiving 2020 ever again.

Requesting and gathering, through the use of ALL STRIPES Rare Disease Research,   all of my medical records, so I know what happened to me,  what the consultation doctor reports show,   what the 83 X rays and many more MRIs and CATs tell,  and what medications,  such as Prednisone,  Rocuronium,  Tobramycin,  and other dangerous drugs (to MG patients) sent me into a five-month tailspin and recovery in 202o.

Everyone says KNOWLEDGE IS POWER !!!

I have joined three MG support groups  …    all Zoom still.  My last  ZOOM meeting             ( http://www.myaware.org ) had 75 participant images …. 75 people  … 3 pages of 25 people just like ME with MG.  I got lots of information, and was not in,  as bad of shape as others… still on IVIG monthly,  still on heavy doses of PREDNISONE,  or still trying to be antibody tested and diagnosed.           SO join a group  … be informed  … and you will feel better knowing you are not alone  … and are not as handicapped and WEAK,  as you were,  when still UNDIAGNOSED with MG.

Go on eBay.  I did and there are 5 very good books at cheap prices  … from other MG patients, as well as doctors  … who contracted MG too,  that went through what you have suffered through   …   and much worse  …  and undiagnosed for decades.  The newest book I bought and read was published by Author House on 2/09/2021, written by three Texas Neurologists,  is a great sourcebook for MG facts  …. but the best part was the second half of the book had 50 chapters by 50 MG patients  .. telling their stories.   That book   I TOTALLY DOGEARED,  MADE SIDE NOTATIONS and  UNDERLINED.

With those 5 books,  I feel much better and more confident about my MG condition now,  and my future going into 2022,   after doing ZOOM support meetings and reading these books.  I AM ME AGAIN  … and in my HAPPY PLACE again.  I just take one day at a time,  …    and     COOL  IT.   There will be a tomorrow now for me to accomplish something,  that I did not get done today,  by MG pooping out,   laying down,   and recovering my strength again,  this afternoon.    Escape for a day,  have fun,  forget you may be terminal.  RESEARCH and NEW  MEDICATIONS may be ahead, if you stay in remission,  positive, and stay safe.

FINALLY  …. find an MG Neurologist,  that you trust,  who answers all your questions, who does not look at you as if  “YOU HAD THREE HEADS” (describing you in his report as “a POOR HISTORIAN”  and “TANGENTIAL”),   and THEN religiously take all your REAL MG DOCTOR’s advise and medications for MG exactly as he said  … no missing a day,  or a single pill … and then you also will see a great future for yourself  … and a return to calm and hope.  My KNOWLEDGEABLE Neurologist is worth his weight in gold.  The three clueless hospital neurologists from the first of five hospitals of 2020  …  will be forgotten and forgiven,  in time.  HAPPY NEW YEAR 2022,   …   and then many more !!