Reply To: Remission??

[Community Member]

No one has ever told me what all the “D” symptoms of MYASTHENIA GRAVIS   meant in ENGLISH either,  I just have to keep GOOGLING to see what DIPLOPIA, DYSARTHRIA, DYSPHAGIA, DYSPNEA, etc mean in ENGLISH.  No doctor or nurse talks to me about meds, test results. or REMISSION.  They seem to be too busy.   HIGH VOLUME   …   REPEAT BUSINESS  … refer me to SOMEONE ELSE   attitude.  So I don’t know what REMISSION is.  I only know what I feel like NOW.

Thanks to Michelle’s link yesterday to MDA.org, I know know what those words mean.  ALLSTRIPES RARE DISEASES has been great about getting my medical TESTS, CONSULTS, and HOSPITAL MEDS given, dates, and doctors passing thru,  reports for me  … Now I am trying to translate MEDSPEAK   “words and abbreviations”  TRUS… FOLEY… ILIEUS  … TRACH  … dangerous TOBRAMYCIN  ….   into Layman English.   I was sedated for a month, and only know  what could have been happening, a year later.

So I believe I am in REMISSION for 15 months now.  No one told me.  I am just feeling much better now, compared to other MG patients in my four MG SUPPORT Groups.  I have had only the original 5 hours of 5 days of IVIG,  I have been tapered off PREDNISONE for a year now … so my medically induced DIABETES II is in remission since Halloween and no more LANTUS shots.

I am still taking all my 11 meds … 5500 MGs per day, RELIGIOUSLY, and my only symptom is still ACUTE ONSET INSOMNIA  … and needing to rest from MG pooping out and only 3 or 4 hours of sleep a night.      So to me, judging from WHERE I WAS  (5 months in 5 hospitals in 2020) … and WHERE OTHER MG SUPPORT PEOPLE ARE  in their journey,   …. I consider myself in REMISSION.    But I am playing it SAFE still, and not ever going out of town ever  …. where would I find an MG SAVY NEUROLOGIST  in another city????

It took me 8 months to be diagnosed   … and it was by one very smart NURSE  … not a doctor.

SO SAY WHAT YOU WANT  … but no “doctor ???” can tell me that I am not in REMISSION.