I have been in remission for about 15 months so far   … from my ACUTE OCULAR  MG and GENERALIZED MYASTHENIA GRAVIS,    I am taking 2000 mgs of CELLCEPT and 180 MGS of MESTINON daily, so I am still feeling fine.  PREDNISONE is a NASTY STEROID    ….   that causes me,  like many other MG patients  …  INSOMNIA,   a large weight gain,  and medically induced    DIABETES II, when combined with being forced to take a STATIN drug.

Fortunately my fifth hospital of 2020, was able to taper me off PREDNISONE, when I left on 11-27-2020.  So my new doctor was finally able to taper me also the nasty LANTUS syringes, by Halloween 2021,  as my losing PREDNISONE dumped my sugar scores, so I am now in Diabetes remission also.

In these comments, you discuss finding a MG NEUROLOGIST, who actually knows what MG means in ENGLISH.   I found one finally, after searching for 8 months, and spending 5 months in 5 hospitals in 2020.   MY KNOWLEDGEABLE MG NEUROLOGIST is EXCELLENT   … and worth his WEIGHT in GOLD.  So if you find a great doctor   …NEVER let him go !!!

It took forever for me to get even some of my medical records  … and ALLSTRIPES RARE DISEASE RESEARCH GROUP has been really wonderful in strong arming doctors and hospitals for my tests, consults, and documents  … so they can do their research with solid MG patient data … and I now know the names, dates, and times,  of the two NEUOLOGISTS and the NEURO-SURGEON, at my first hospital  … where I ended up with a CODE RED resuscitation  …. because of “ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE”.   SO I avoided those “doctors” and went to my MG SUPPORT GROUPS for advice for GOOD DOCTORS, who were paying attention in med school and rotations.

The consulting  reports of those three  “neurologists ??” suggested all my MG symptoms were either  ….  stroke,  seizures,  drugs, drunk,  heart attack,  toxic  metal poisoning,  or some infectious disease.  So the three neurologists tested me for HERPES and magnesium,  not ANTIBODIES.   So when my first X-Rays came out NEGATIVE… but slightly blurry,  they sedated me with PROPOFOL and ROCURONIUM, according to my newly received hospital papers, so I would stop moving for MRIs and CAT SCANS.   SO I did stop moving and breathing  … until the nurse called a CODE RED.

My advice,  once I found a NAME FOR MY DISEASE  …  MG   … and started GOOGLING LIKE CRAZY … is find an MYASTHENIA GRAVIS SUPPORT GROUP, join their ZOOM meetings … and learn from other MG patients.

You will find out who are the GOOD DOCTORS,   …. lazy doctors with poor bedside manner and training,  and the GOLDEN MG DOCTORS.   Ask and they will tell you what medications and infusions they are on, the good and the bad side effects,  how to jump through hoops,  for insurance paperwork,  and what doctors will LISTEN  …   when you attempt to get a referral for THYMUS and ANTIBODY TESTING  … so you can PROVE that you have MG  …. and not a fatal brain stroke.

Your support group moderator will often invite a professional to a ZOOM meeting.  Last month the Phoenix group had a SOLARIS contact person, and my ATLANTA support group had a VYVGART representative to answer your questions.  Also several of my fellow MG patients, were still on monthly IVIG treatments, and could tell me about those too. (I have only had the original 5 days of 5 hours at the second of five hospitals.) Last Saturday   4-9-2022, I  ZOOMed with a second ARIZONA support group.  On 4-23-2022, ATLANTA is doing a live, in person meeting  … but also ZOOMing for those of us attending online from out-of-state.  I believe it is 10 am to 1 pm.

I am glad to see that Andy Coyne … from across the pond  … has been responding to this “thread”.  I use their MYASTHENIA GRAVIS FOUNDATION website  http://WWW.MYAWARE.ORG    all the time for their articles and papers, that I can download and print out, …    especially their ones on DANGEROUS DRUGS for MG PATIENTS,   what to tell the arriving EMERGENCY HELP 911 MEDICS, what paper to give to EMERGENCY ROOM doctors,  and what MG paper to give to an ANESTHESIA GIVER  … so you too don’t get your BREATHING SUPPRESSED  … when your undiagnosed MG is already suppressing your breathing  … and end up needing to be resuscitated like I was.

I just signed up for the LONDON MG ZOOM drop in session for Tuesday 4-26-2022 at 6:30pm  … that is 10:30 am my time.  They also are having a 1 pm session on another day  …  but I still have MG onset INSOMINA issues  … was still awake at 4 am for the last two ZOOMs from there.   One of my London ZOOM support meetings  .. had 75 attendees online.   Three pages of 25 people  … five columns of faces … and five rows down.   All like me … all with MG.  I did not feel so alone  … although some accents were THICK,  like my grandmother’s side from WALES.

My GOOGLING   …  says there are 60,00o diagnosed MG sufferers in US,  and about 12,000 across the pond, in the UK.  But they seem to have more government support, lanyards, special door keys, and other services.  What they say is TRUE   …. we are two countries separated by a COMMON language.  After several ZOOMs with   www.MYAWARE.org,  I am getting better with the accents,  but we are probably just as SCREWY to comprehend,   … if hippies, or from Boston or Texas.

So get on an MG  support group mailing list and they will email you the date of their ZOOMs and the LINKS to click into a meeting.   SUPPORT GROUPS have given me a great help  … in helping me through this past year, and keeping me in remission.   Also,  it gives me hope, as many of my fellow MG patients, are still doing monthly IVIG  … or still trying to taper off PREDNISONE  (There but for the grace of God … go myself still).

So find these groups and sign up  …. they keep a list of GOOD DOCTORS !!!  Your fellow MG friends will help you FIND A GOLDEN NEUROLOGIST too.