Jonathan A

I  AM  ME  AGAIN  !

On July 25, 2019,  I started showing symptoms of very weak finger strength  … then the droopy eyelids, competing eyeballs, and multiple rays  with every street light being a Christmas star.

For eight long, suffering and weak months, no doctor could diagnose my ACUTE OCULAR and GENERALIZED MG, despite showing EVERY POSSIB…[Read more]

This is a big question for me.  Since I was diagnosed, I continue to take the same dosage of 3 x 60 MGs  = 180MGs daily of MESTINON and   2 of 500 MGs twice a day = 2000 MGs daily of CELLCEPT.

My symptoms started  7-25-2019 and after 8 months of CLUELESS DOCTORS not diagnosing me, I was finally diagnosed  on 3-25-2020, by a third floor nurse…[Read more]

I know the exact day.  About 5:30 am on July 25, 2019.  I needed to go to the end of my street to switch the metal pull up gates  (one out and one back in) at the concrete irrigation box  … to divert the west bound ditch water to the south bound ditch  water  to go to my street of yards.  My fingers were too weak to pull up the metal slide…[Read more]

The only way to stop the weight gain is to    … GET THE HELL OFF OF PREDNISONE.  You need to find a knowledgeable “old-school” doctor, who can taper you off of it successfully.  I also was on 60 MGs daily, in addition to over 5000 MGs of other meds, daily … at home after I was released from the fifth hospital of 2020 on Black Friday 11-…[Read more]

On  BLACK FRIDAY, I celebrated my second anniversary of leaving my fifth hospital  … after 8 months of not a single doctor being able to correctly diagnose either OCULAR MG or GENERALIZED MG.  Even two NEUROLOGISTS, a NEURO-SURGEON, and an EYE DOCTOR failed me miserably.   I was diagnose by a third floor nurse at the second of five hosp…[Read more]

On Black Friday this year   … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search.  I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine.  My new family doctor was scheduling his patients for WEDNESDAY  appo…[Read more]

On Black Friday this year   … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search.  I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine.  My new family doctor was scheduling his patients for WEDNESDAY  appo…[Read more]

I only have a quick moment to reply  .. and will do longer later….

It took me eight long suffering and weakening months from 7-25-2019 to 3-24-2020 to be diagnosed with ACUTE OCULAR & GENERALIZED MYASTHENIA GRAVIS.  Not a single doctor could diagnose a rare disease with 9 or 10 symptoms  … and how all my symptoms could be ONE DISEASE.  I was…[Read more]

Just a quick reply   … as I just got back, and have a internet connection again.

To DEV  … You do not need a LOCAL support MG group to join one.  I belong to four MG SUPPORT GROUPS.  I contracted MG on July 25, 2019 and on Feb. 4, 2020 after being undiagnosed for 6 months, I went to a BANNER HOSPITAL URGENT CARE Center to find KNOW…[Read more]

I am a construction worker also,  and supposedly OLD  (I remember where I was and what I was doing when JFK died on that Friday).

I am finally ME AGAIN, and am in MG REMISSION now.  Age is a state of mind. I don’t feel OLD, now that my symptoms are in REMISSION, except for ACUTE ONSET INSOMNIA  … but those damn doctor offices all keep using YOU…[Read more]

It would say YES !!!   But the question is still out there in LIMBO  … with some say yes  .. others say no, according to what I have read and been told by doctors.   No one knows shit about MG.  It was never taught in  med school apparently.  It took me 8 months to be diagnosed.  No doctor could diagnose me with MG despite having every symptom,…[Read more]

I am very interested in my hearing loss too.  The hospital doctors gave it to me, at the first of 5 2020 hospitals  ….  so I had 100% hearing and speech loss for 4 months  … and my hearing is only to 70% back.

I started having MG symptoms on 7-25-2019  … and no doctor could diagnose my disease.  I was finally diagnosed with MG on 3-24-…[Read more]

For handing out candy, I selected in the past something that look great and was cheap  … such as Tootsie roll pops or milk duds.  But then in the past six years, there has been less and less kids coming  … with the last one  … pre COVID, the last count was only 8 kids.

So I had to try EAT all the left over candy that I got stuck wit…[Read more]

For me  … saying only three words is about IMPOSSIBLE  … but I am in remission now, after eight months  and five months in five hospitals …..  searching for a reason for my 8 or 9 symptoms, and getting the REAL TESTS and treatment finally.

Not a single doctor who saw me or tested me could diagnose me.  I was finally diagnosed by a thir…[Read more]

Get your doctor to taper you off Prednisone as soon as you can.  For eight months, no a single doctor or hospital could diagnose my acute ocular and generalized MYASTHENIA GRAVIS. I was finally diagnosed by a third floor nurse at the second hospital.  She recognized my 8 or 9 symptoms and talked the doctors into a neuro consult and t…[Read more]

The TRUE ANSWER to how many MYASTHENIA GRAVIS patients are diagnosed and alive is much GREATER THAN THOUGHT.

I regularly try to keep up with my MG bookmarked websites, and attend by ZOOM my four MG support groups at every opportunity.  I heard or read that there are 60,000 MG patients in the US and 12,000 patients in the UK.

It took me 8 months…[Read more]

I have been in REMISSION from my ACUTE OCULAR MG and ACUTE GENERALIZED MYASTHENIA GRAVIS since 11-27-2020 … after I left my fifth hospital of 2020.    No a single doctor was able to diagnose MG  .. despite having every single symptom.   I was finally diagnosed by a third floor nurse,  who had been in the wards long enough to recognize my MG sy…[Read more]

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]