Jonathan A

So far this discussion has mainly talked about MESTINON, as well as PREDNISONE that is a more dangerous side effect for me, that they were able to taper down and KILL.

I have been in remission for 15 months now.  I have always taken 180 MGS (3 of 60) daily of Mestinon/Pyridostigmine Bromide and 2oo0 MGs (two 500 in am and two 500 in pm) daily of…[Read more]

I am wishing you well on your travels  …  and will be praying for you.  I have been in remission for a year now and take 2000 MGs daily of CELLCEPT, 180 MGs daily of MESTINON, and was tapered and weaned off that nasty STERIOD PREDNISONE … which had HORRID SIDE EFFECTS.  So if you are not on CELLCEPT,  ask your doctor  … I have had no relap…[Read more]

Find and ZOOM with  local California MG support groups, who have ZOOM meetings monthly.  They will have a list of the most MG trust worthy doctors near by.  The support group moderator keeps a list for her members of the nearby  GOOD and the UGLY (nonMG savy doctors).  I belong to four groups and ZOOM with them regularly.

See also University of C…[Read more]

Sorry to hear that you are still having MG problems.   I am in remission for 15 months, have only had the original 5 days of 5 hours of IVIG  … when I was finally diagnosed after 8 months of being very, very sick.  No doctor could diagnose me  .. a floor nurse  … recognized my symptoms and talked them into testing my ANTIBODIES… all three…[Read more]

I started showing all the MG symptoms in July 2019 (I had just turned 68 the month before)  .. and was undiagnosed by every doctor for 8 months.  Now I have been in remission for 15 months.  So far I have not had any issues getting a woodie, once I was back home after five months in five hospitals  … with no privacy or lights ever out.

But I a…[Read more]

So far, after 8 months of searching for a diagnosis for my disease….and now having a name for it  … ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS,  I can now google and ZOOM with support groups to get educated.  My support groups have really helped me out, answered my questions, and directed me to websites and trial clinics  with inf…[Read more]

I know that sex is a rather unique subject …   for a Myasthenia Gravis website, but I thought that I would put in my two cents, even if it means being “held for moderation”.

In July 20219, I started showing all the symptoms of MG, starting with OCULAR MYASTHENIA GRAVIS, and then all my other body parts.  I had just turned 68 the previous Ju…[Read more]

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 …[Read more]

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 med…[Read more]

Reply to Amy.   I have two very good DANGEROUS TO MG PATIENT MEDICATION LISTS. I always take them with me to ALL doctor appointments.  Also I carefully GOOGLE all of my medications,  so I know their SIDE EFFECTS.     I keep a copy of everything in my messenger bag, in case,  I am sedated or lose my speech/hearing again due to their mistake…[Read more]

You were very lucky to be diagnosed in only 6 months.  NO doctor could diagnose my acute OCULAR and Generalized MG in 8 months of searching for an explanation.  I was finally diagnosed by a third floor nurse at my second hospital.  The three neurologists at the first hospital did not know about MG either, as well as my own eye doctor ….   de…[Read more]

As a reply to your wondering about VYVART, check into my earlier comment awaiting moderation.

FIND AND JOIN a MYASTHENIA GRAVIS SUPPORT group in your area.   They all have  ZOOM meetings on a monthly basis.   You can ask any questions and fellow MG patients can tell you their experiences with various invasive MG drugs.   Also the MG SUPPOR…[Read more]

To reply to Michelle’s question,  …. being currently in Arizona, I am thrilled with cool shady days.  I am formerly born and raised in Minneapolis  .. so I love the cool weather, all the shade trees, and the breezes blowing in from all those lakes, and remark …what a nice Minneapolis morning, when it happens in our blazing heat so se…[Read more]

THANKS AMY  for working for a rare disease foundation.  By googling for support groups, I found two and they are continuing to be great … trying to pry my own medical records, tests, consults, and  results out so I can see what they did to me  … and how they were screwing around and were never able to diagnose my MYASTHENIA GRAVIS and OCU…[Read more]

I need  my Caffeine too,  but hate its bitter taste, or was it just grandma’s FOLGERS ?  So I usually have to take PEPSI or M&M’s in the morning to get my Caffeine to get awake, enough to make it through the first part of the day  …but you must stop by NOON.

I am new into MG and have never taken any pills or had MG before.  But I am in REMI…[Read more]

My answer would be  DISCERNING  !!!    I am finally in REMISSION….    I am HOME….  I have a computer now to start GOOGLING ….       Also, with the help of ALLSTRIPES and also PICNIC HEALTH RARE DISEASE  RESEARCH GROUPS,    …..   they have been able to find my countless medical reports, tests,  consults,  and hospital guessing games, …[Read more]

I am safely for the past 15 months in remission with CELLCEPT and MESTINON,   so I am slowly getting back to working on projects and gardening, now that I know that I have  “finger strength” back to keep the grip on the “on levers” of mowers and edge trimmers.  Also I am now confident enough to get back down on my knees again, and know that I can…[Read more]

I started all my MG symptoms on July 25th, 2019 and for 8 months was undiagnosed by every clueless, and un-MG educated doctor who saw me.  I was finally diagnosed by a third floor nurse at second hospital.  I am in remission now for 15 months.  I have not had vomit yet, but when I was still undiagnosed and not getting any meds yet (2000 mgs CE…[Read more]

I had a bad reaction to an anesthesia (to stop me moving for MRI and CTscans)  because at the sixth month point, no doctor could diagnose my Acute Ocular and Generalized MG.   I stopped breathing and a CODE STROKE was called and I was resuscitated multiple times (an overdose of muscle suppressing in an undiagnosed MG patient) …. med paper sa…[Read more]

This is a question that I have had for a while.   I have a name for my disease now, after 8 months of being undiagnosed BY EVERY DOCTOR WHO SAW ME, then  a hospital nurse finally recognized my symptoms and got me treated, tested, IVIGed, and on MG drugs.

So I have been constantly googling,  now that I found my disease name.  ACUTE OCULAR and GENE…[Read more]