[Jonathan A]

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,  to me to have and read,  after I searched, on my own,  endlessly for 11 months.  BUT WHERE IS THE TRANSLATIONS  from medspeak to layman ENGLISH???   that I need to DISCERN  ???

So I know now and can read what they did to me, what they drugged me with (what and why MORPHINE, ASA,  and FENTANYL),   what is a CODE STROKE and why, and how it was that I ended up being transferred to five different hospitals in OVER FIVE MONTHS.  What does ICU, PACU,  FOLEY,  and  LTAC mean ???

So, I am still DISCERNING and GOOGLING LIKE MAD,  as I don’t know what most of the words you listed above,  mean in ENGLISH.  But the   WORDS look familiar from all the hundreds of report pages, that I am now reading and circling in RED,  all the WORDS to google.   I know now that the droopy eyelids, means closed eyelid ???,  and is called  PTOSIE ?? but why  don’t doctors speak ENGLISH ?    Also I I have never EVER before,  had a drug prescription ever written for me by ANY DOCTOR,  before I got MG,  so I never really understood why EVERYONE keeps saying that the drug prescription writing of all doctors is SHITTY and UNREADABLE.

Now I know what they meant, as even a magnifying glass does not make it much better to read those child scribbled, consulting reports for me.  Fortunately some reports are readable, but MISSPELLED, and say done by a DRAGON, at the bottom.   About the only legible words, that those doctors wrote,  are the date and “IVIG”.  So I don’t know what your “D” words,   ….   except decline and decrease,    …. mean in ENGLISH.  SORRY

[Jonathan A]

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 stand up again, without my calf muscles dying, and having to crawl back and get into a chair or a planter box edge to rest, and try again to get on my feet.

So being in remission NOW.  I feel that I am ME AGAIN  ….  and can start considering what passions I can go back and restart.  I was in five hospitals for 5 months,  and had total loss of speech and hearing, due to a hospital overdose of ANESTHESIA to keep me still for CATs and MRI’s.  Then I contracted in their ICU three types of PNEUMONIA,  so they gave me TOBRAMYCIN and other ANTIBIOTICS, so I had total hearing loss for 4 months also.  So I am thrilled to be hearing and talking again  … so want to go to concert venues, or even a local sing-along or a Karioke (sp??) once people can start meeting again.

Also now that I was finally diagnosed with MG by a hospital nurse, after EVERY DOCTOR FAILED he for 8 months, I have been attending by ZOOM three MG support groups, and learning from them … and how they made it to a diagnosis and their tips  …. but it would be so nice to talk to MG people IN PERSON.  I have yet to me one,  and share war stories, and who are the GOOD doctors in my area, and which ones are the clueless NEUROLOGISTS, who were unaware of MG and kept testing me for stroke, seizures, GERT, diabetes, heart attacks, toxic metal poisoning, and infectious diseases … instead of REALLY LISTENING TO ME …. and my symptoms.

But I am happy to be well again. So refind your passions, and take time for resting breaks.  WISH YOU SUCCESS…. Too.

[Jonathan A]

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 CELLCEPT and 180 MG MESTINON),  I would always get Campbell’s Chicken Noodle Soup going up my nose, instead of down my throat.  Really weird   …  a noodle up your nose. You could smell and feel it.

Since I have been in remission,  I keep having to wipe my wet drippy nose most of the day.  My nose is always free and clear, no blockage, or cold, just drippy, and need to run for a Kleenix, or more a a toilet size tissue.  A couple of others from my three current support group ZOOMS say it is probably one of my 13 daily meds.

[Jonathan A]

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 said I got ACUTE RESPIRATORY FAILURE due to anesthesia.  I am telling you this as they sent me to ICU  … to recover, and within 24 to 36 hours, the med reports say I contracted three pneumonias in ICU, that the papers named each of the three.

They gave me three named antibiotics, including TOBRAMYCIN, which is not a good med for an undiagnosed MG patient   ….   and is on the dangerous drugs for MG list.   I had TOTAL HEARING LOSS for 4 months, and had to communicate by paper pad or white board, as I was constantly intubated and later TRACHED, along with the total hearing loss, was no speech either.  So I can not tell you what to take …. only what to avoid.  Ask  a NEUROLOGIST you TRUST.  I am in remission still taking 180 mg MESTINON and  2000 mg daily of CELLCEPT.  They were able to taper me off that nasty PREDNISONE, after PREDNISONE and their STATIN meds  … gave me medically induced Diabetes II.  After my PREDNISONE was tapered and killed, then my doctor was able to then taper and kill also any more LANTUS & LISPRO INSULIN SHOTS too.

Wishing you luck.  Make sure that anyone, who wishes to do something on you, understands the risk of CERTAIN  antibiotics, anesthesias, and blood thinners/anticlotting meds too.

[Jonathan A]

Gosh, Dave, you are one EXTREMELY LUCKY GUY  … to come across a medical “professional” who recognized your OBVIOUS MG SYMPTOMS and diagnosed you.   My medical angel was a third floor nurse, at my second of five hospitals,  who recognized that I had ACUTE OCULAR MG as well as EVERY symptom of GENERALIZED MG.

I was attempting to watch TV and she recognized what I was trying to do  … with one eye closed, my left eyelid held up by my weak left hand, held up by my weak right hand.  She wrote on my paper pad in reply (first hospital gave me hearing and speech loss due to antibiotic side effects) and said that she knew exactly what I had, as other patients right there at St. Joseph’s Hospital had the same symptoms that I wrote on my paper pad.

She said I had MG, and got me tested, IVIGed, and on CELLCEPT and MESTINON.  It took me 8 months before I could find a properly educated professional that knew about MG,  and I had already, in my search, told every doctor,  who saw me, that my grandmother died of LUPUS,  which is also a neuro-muscular disease.

My new Neurologist,  Dr. Kilian, is worth his weight in GOLD, does not look at me as if I had three heads, does not write me up as a POOR HISTORIAN ( no one can have 9 symptoms and only one disease), and at my first appointment, after 5 months in 5 hospitals,  Dr. Kilian, gave me my first physical in 30 years, and tested by my strength in various muscles,  even using the rubber knee hammer (which I had not seen in use in decades).   When you find a GREAT DOCTOR or NURSE, never let them go.  I had already been seen by an eye doctor, and in the first hospital by two neurologists and a neurosurgeon, who apparently were never told in med school …  about MG.

[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 !!

[Jonathan A]

It took me 8 long, weakening months to finally be diagnosed with acute ocular MG and generalized MG, on 3-24-2020.  But I have been in remission, since 11-27-2020, after spending over 5 months in 5 hospitals in 2020.  My last stay was at two hospitals in November.  My toasted immune system from all my meds  … could not protect me from a septic olecranon bursitis infection of my left arm,  which my weekly home care nurse recognized, and sent me back packing for urgent care again for another MG crisis.

I am in a happy place now.  I finally have a name to google for my incurable disease,    my meds are working fine,    that nasty steroid PREDNISONE was tapered and killed off on 11-27-2020,        I had my third Moderna shot on Tuesday with no soreness much,   and that medically induced Diabetes (from the side effects of statins and steroids that were killed off) that required nightly shots of LANTUS INSULIN was also tapered and killed on 10/25/2021.

The one thing I want to say is   ….. google your disease.  There are many websites such as this one  … as well as WEB MD, Mayo Clinic, Univ. of Michigan, ALL STRIPES,  John Hopkins, http://www.myaware.org, and eBay too.   Find these sites.  Get printouts of dangerous to MG patient meds,  and printouts of what to tell 911 rescuers,  hospital antibiotic givers,  and emergency room medics.  Have copies of these printouts in your medical notebook,  along with your doctors and medication lists to give to someone, when your mouth, phlegm, eyes or hands are not quite themselves

Go on eBay.  I got my MG MEDIC ALERT BRACELET  there.  You need to inform medical persons that you have MG  .. and are not a drunk or having a stroke,  slurring your words with a droopy left eyelid and face.

On eBay,   I bought five WONDERFUL BOOKS, very cheap, worth double the price I paid, and one really BAD 40 page holistic MG recipe book.   One new book, on EBAY,  that just came out on 2-9-2021 by AUTHOR HOUSE by three Texas Neurologists, has 50 MG patients, in 50 chapters, telling of their search for a diagnosis and a remission for their MG.   My copy is now heavily underlined, and dogeared,  with many side comments of ME TOO !!!!  Also unfortunately, many of these 50 MG sufferers went through years of clueless, uneducated doctors, without a diagnosis.  So I did not feel so bad that it took me 8 months  …   but I was angry as hell,  that this disease was so unknown and underdiagnosed

ALSO,   find a support group in your area, or anywhere, and join them on a ZOOM meeting.  After reading my 6 EBAY books and doing a dozen ZOOMs,  I am in a much better place.  I realized that I am in better shape than some of my MG fellow patients.  I learned a lot from them, and I got answers to my questions, that most of my non-Neurologist doctors don’t have the time or knowledge to answer.

I was just on a ZOOM meeting last week, and there was restricted, sign up registration to first 70 people …  then a waiting list.  That night there was 75 people with MG just like me.  Three pages of live people faces  …  male and female  …  just like me  … 5 rows across and 5 rows down of faces. I was not alone  … and I could ask questions that night.  It was from a completely different time zone  … but with my INSOMNIA, I was still awake.   Like the MG FOUNDATION, they have a great lists of articles to download,  print,  and give to all the doctors,  911 crews,  and anesthesia givers you meet.  Check out      http://www.myaware.org

REMEMBER WHAT THE SUPPORT GROUP WEBSITES  say  … BE YOUR OWN QUARTERBACK OF YOUR HEALTH  …. BE EDUCATED.       May you live long and prosper in 2022.  Then you too can find your  temporary Happy Place  …    in spite of our horrid, unknown disease.

 

 

[Jonathan A]

I have had three MODERNA shots with the last one on Tuesday 12-28-2021.  I have had no problems, except a sore right bicep for a day on the last one.    I started having MG symptoms on 7-25-2019, was diagnosed 8 months later eventually on March 24, 2020.   My undiagnosed MG was so bad, with eye problems and weak muscles and swallowing that I went to the hospital URGENT CARE on Feb 4th of 2020 and it took three hospitals and over four months to recover from being undiagnosed from MG and getting even worse.   So I had MG before the CORONA VIRUS PLAGUE ever arrived from China,  and did not get out of third hospital till 6-11-2020.

From what I am finding out from these comments, it almost sounds like the vaccines may have brought forward and exposed your still dormant and undiagnosed Myasthenia Gravis illness, and you could have been having MG symptoms and fatigue earlier.  I guess much more research and gathering of  MG patients information and their medical storylines  for every MG patient must be documented and maintained  ….  to help future research and a possible cure.  It is also a possibility that if patients have had MG for a while … before Covid arrived, maybe our MG meds,  for some of us,  unaffected by the shots,  helped us have minor or no ill effects.

[Jonathan A]

Some people get very imaginative when wrapping a gift, thinking outside the box.  It usually best shows up at holiday gift exchanges, bridal showers, or mom-to-be events.   It is amazing all the colorful things, that you can find cheap at Dollar Tree,   99 Cent stores, or Big Lots stores at bargain prices.

Depending on what size and type of gift, you will find in these stores, pillow cases, smaller towels, throw pillow covers, small round fabric tablecloths, a kitchen appliance fabric cover,  or metallic tablecloths.  Put the gift in the center, tie it up closed with a bread wrapper tie, and add a big bow.  Also go to the school supplies section  … they have colorful metallic foil pocket file envelopes,   …  or small wood vegetable or fruit crates for paper file storage.    If you are a great baker,  find a cute and cheap wood or wicker basket, make some cookies, caramel apples, or popcorn balls to put in your basket, and cover over the contents with a colorful towel or napkin.

Last year I hit a couple clearance EASTER HOLIDAY sales.  The colorful baskets all in different pastels colors was amazing.  I still have not used them  …. as,  because you have MG you get tired, have to go lie down, and leave it for another day.  Stores like Michael’s, JoAnn’s, and Big Lots,  are starting to drop their prices or have coupons.  Find a few baskets, wood crates, artsy mailboxes, those boxes that look like books (at Michael’s)   …..   from EASTER, FALL, or CHRISTMAS holiday clearances running now and after December 25th.  Then just fill them with gifts, cookies, fresh fruit,  homemade jelly, spices, cooking utensils, new baby needs,  …add a napkin cover and you are done… ready to go  … for next year.  Also you are giving TWO GIFTS IN ONE !!   The gift and  “its wrapping”.

No more wrapping paper, sticky tape, or trying to get your MG fingers to behave and not lose their grip strength.  Also, if your fingers are absolutely dying, and you need your left hand to hold up your MG right hand, while holding a fork to eat at dinner, like happened to me several times   …. buy some LARGE decorative socks.  You see them everywhere now  …. with clean, naughty, superhero (for kids), or Irish sayings.  Then stuff your gift inside, use a bread bag tie to close it, and add a bow.

The last time that I went to SPENCERS GIFTS  … pre covid, pre MG onset. I bought these great socks.  Now that I have my diagnosis   ….   after 10 months of searching and four months in three hospitals because of it  …. those new socks took on so much more meaning.

For those of us going slowly into  MG recession  … it seems like I keep saying  … well I will do it tomorrow, and I go lie down again NOW and rest for a while,  and build my energy back up again.  WISHING YOU BETTER HEATH IN THE YEAR AHEAD  …..

[Jonathan A]

This is Jonathan.  I am still awake now at 1:54 am ..and reading this  … as I tried twice to fall asleep and could not.  I find that going to bed early does not make falling asleep quicker  … and getting to bed at 2 am makes it only a little faster falling asleep  …. so I am up trying to get sleepy.

I still taking Mestinon as well as 200o mg of Cellcept.  I was finally tapered off Prednisone  … after it and STATINS gave me medically induced DIABETES II and a big weight gain.   Also I take over 5500 mg of other pills daily.  Last month my newest doctor finally tapered me off 18 months of insulin shots  .. that the hospital doctors force me to take.    I sure hope that this Univ of California at Irvine study funded by MG Foundation Calif. gives us MG/Insomnia sufferers some answers.

It takes forever to fall asleep.  Is it MG side effects  … such as muscle pain/weakness  …. or pill side effects… such as 200 mg of Cellcept ?  I keep turning from one side to another with sore shoulder/bicep soreness while I wait to fall asleep.  I have tried all the “DO NO DO’s”.  My only success has been  .. if I totally poop out by being out  … with doctor appointment, pill pickups, and errands …. without a chance to rest.  Then I arrive home … and say screw taking the  PM pills now.. screw dinner… I am laying down for a few minutes  … then I accidentally fall asleep for two hours.   Is it because MY AM PILLS WORE OFF ????  So I get up… eat my dinner and my  PM pills … and quickly try to get back in bed.  Then I can not get asleep again for at least two hours !! Why?? THE PILLS you just ate ???

You are lucky to have a Union job …I had one as Fleet Service agent for a large airline.   For 8 months I kept getting sicker and weaker with ACUTE OCULAR and generalized MG.  No doctor could ever diagnose me  … finally a floor nurse at the second hospital diagnosed me  … she had seen MG patients and recognized my 8 or 9 symptoms.  I was lucky at the airline  … as I had sick days that I never touched  … and we could also pick up/drop shifts with co-workers up to 30 days ahead by computer website.   But my undiagnosed MG made my life SO UNKNOWN  .. that I had to retire early … as I was holding out for my 15th anniversary  …. but the union and the airline are still arguing over a new contract from preCOVID arrival….. So I had to retire 10-30-2019 from union work.

I did two sleep studies but no results.  They never talked to you.  I sent in ahead of time  … their forms…my medications lists….. my MG disease history….. but they never talked.  They just hooked me up, sent me to bed (arrived at 8pm… they turned on lights at 5am and threw me out  .. got about 1 to 1.5 hours sleep.  Got home and never got asleep again)   and second time (arrived at 9 pm… they turned on the lights and threw me out at 3 am.  I got 30 minutes of sleep  … but because it was so early, I was too awake, got home, and fell asleep twice)

I HAVE ONSET INSOMNIA.  They never asked or cared about … all the time I spent trying to get asleep in their bed  …. only ASLEEP counted on their meters.  The second attempt/nite was HORRID.  They kept trying to sufficate me  .. by covering my nose with all types of masks/hoses.  I have always slept on my side, breathing thru my nose, and talking thru my mouth.  With a mask there was not enough air to breathe in  .. or room to exhale air out. I never really fell asleep at all  .. unless I “put my finger upside of my nose like SANTA CLAUS” so my finger could break the mask seal… so I had fresh air to breath.  It was another case if ill-educated medical personnel  … who did not know anything about MYASTHENIA GRAVIS, knew anyone with the disease, or how to handle people who could not fall asleep to do their electrode tests.

So I keep googling things and watching these websites to find answers and printing out information off websites … to educate doctors who have never seen a suffering MG person.

[Jonathan A]

Thank you for commenting about MG and your own situations that you had to go through.  WE LEARN FROM EACH OTHER…….  It took me 8 months to get a diagnosis. No doctor was ever able to diagnose my ACUTE OCULAR MG or my ACUTE GENERALIZED MG symptoms.  Finally, an intelligent floor nurse at the second hospital saved me and diagnosed me, and got me tested, treated, and IVIG treatment. She said “I know exactly what you have. We have patients right here at St. Joseph’s hospital  … who have all the symptoms that you are exhibiting. You have MG!”

I have been in remission since late November of 2020  … and am doing okay with large doses of CELLCEPT and MESTINON,  after having very bad reactions to the steroid PREDNISONE  … that they finally tapered me off of.

I was finally thrilled to have a name for my disease  … so that I could also google and research websites such as John Hopkins, Mayo Clinic, and a British one with great links on http://www.myaware.org. I have also googled EBAY and bought 4 excellent books that tell the stories of 56 MG patients. The key to a diagnosis  … is having a trained eye doctor  … who notices your MG symptoms  … and refers you to a NEURO EYE DOCTOR  … who then suspects MG and refers you to a NEUROLOGIST for proper tests and an MG diagnosis.  But my eye doctor did not recognize my eye problems and sent me on my way with a prescription for 20/30 reading glasses.  So I was very unlucky and lucky too.  My eye doctor failed me as a doctor  … but at least he did not try to talk me into an eyebrow lift  … that other MG patients were told to submit to.

So if no doctor believes you, do your research, google questions/symptoms, and find a knowledgeable, trusted NEUROLOGIST. Mine is worth his weight in gold  … and did not look at me as if I had three heads  … when I tried to explain my 8 or 9 symptoms  … that got worse in afternoon hours. There are support groups and ZOOM meetings out there  … both locally in the US  … as well as in Britain, that I recently was in on (7 hours earlier in Phoenix from London ZOOM start time.)  BE EDUCATED AND YOUR OWN MEDICAL QUARTERBACK.

Both my “golden” new NEUROLOGIST and the MG websites  … have printable handouts  … that you can give to your other doctors and the arriving ambulance 911 team … about drugs that can be dangerous to MG patients  … such as STATINS, STEROIDS, BETA BLOCKERS, ANTIBIOTICS, and ANESTHESIAS  …. as well as our MG breathing/choking/need to stay sitting (NEVER LYING ON OUR BACK issues).

I had total hearing loss for 4 months, due to an ill-chosen ANTIBIOTIC  …. and had a collapsed right lung and acute respiratory failure  … when they gave me too large a dose of anesthesia …. when my breathing was already badly suppressed due to undiagnosed  MYASTHENIA GRAVIS  … and my compromised DIAPHRAGM muscle breathing.  SO BE EDUCATED AND BE SAFE !!!!!

 

[Jonathan A]

It is really hard to know what to say about one’s medications.  All the doctors kept dumping things into my body, and you don’t know what it is, why you are getting it, and you are left totally clueless.  The doctors were all prescribing medications based on  … what diseases “older people” should have and were not listening to the MG symptoms I did have (but I did not know what they belonged to).

But now  I have finally been diagnosed with MG, been treated, and am in remission and home from 5 hospitals in five months.   I am finally able to sort thru all my continuing medications, bottles, and paper bag drug info inserts,    ….. with the weekly visits of my very helpful home care nurse.

She pointed me to medical websites such as John Hopkins, MAYO, and MG Forums.

So I am still on over 5000 mg of pills and a syringe daily of 15 meds.   It has only been with googling and the help of my visiting nurse…. that I know know what I am taking, why, who started me on it, at what dosage it started in beginning, and what side effects each has.

So I have been in remission since 11-27-2020,  caught MG in 7-25-2019, and finally diagnosed by a intelligent hospital nurse  … who recognized my 8 or 9 MG symptoms on 3-24-2020.   SO I am not wanting to change ANYTHING drug wise … lest I fall out of remission.

According to my visiting nurse … my Myasthenia medicines are Mycophenolate Mofetil (cellcept)  two 500 mg in am and two  500 mg in pm daily  ………   Pyridostigmine Bromide (mestinon) one 60 mg pill in am/noon/pm daily  …..   and Prednisone one 20 mg pill in am/noon/pm daily.

I am still taking the first two drugs  …. but I was having very severe, bad reactions to Prednisone ….  The first hospital started me on Prednisone, after they gave me Acute Respiratory Failure and the nurse called a code stroke and got me resuscitated and alive again.  They could not diagnose MG … and they suppressed my MG suppressed breathing with a BAD anesthesia to stop me from moving for MRI and CAT tests. So I basically died once already. and was administered last rites by a priest in ICU.

Two months later …. when I was finally diagnosed with Myasthenia gravis.. the MG doctor upped my prednisone dosage.  I had horrid results.  The Prednisone, along with statin drugs precipitated my blood sugar reading to the roof.  So I now had Diabetes II (which I never ever had),  Lantus and  Lesbro ?? syringes regularly,  a large weight gain, and every night severe onset insomnia… where it takes hours to fall asleep. So my MG doctor finally reduced my three a day 20 mg prednisone pills … to two 20 mg pills am and pm daily,    then after Thanksgiving 2020 …. the fifth hospital killed off the prednisone entirely  …. so I am feeling fine now …. but have not been able to get rid of the Diabetes since my November 27th,  2020 withdrawal. … but those pricked finger meter numbers dropped tremendously from 350, 400, and HIGH  … down to 120, 42, 74, or 113.

So try to get off the prednisone as soon as safely possible.  So far the cellcept and mestinon and ten other drugs have kept me in MG remission.   I have been buying and reading 5 eBay books I bought …  written by other MG patients  … and they are worth double the cheap eBay price I paid for them.   Every one said …Take prednisone…. and you will quickly gain 40 to 60 lbs  … and they all did …whether it was the 5 foot 2 teenager or the 6 foot 4 minister or the 5 foot 6 doctor.

I was lucky   …  as I was getting sicker and sicker from undiagnosed MG.  From 7-25-2019 at 198 pounds to 2-4-2020 at 6 months later,  I had lost 43 pounds  ….. and spent the next two months still undiagnosed and continued to lose weight on PEG tube feeding.  So,  as I was losing weight being deathly sick,  I was gaining weight back fast on prednisone …. so by mid May 2020, when I was finally allowed to get out of a hospital bed … at the third hospital and go to therapy (to relearn how to stand and walk), I weighed 166 lbs on the  therapy room scales.  But they did not stop the prednisone till 11-27-2020  …. so I ballooned up to 190 lbs today.  Still 8 lbs less that before I was sick and was 198 lbs.

Every MG person is different.  Except for my MG doctor, the other doctors don’t seem to know much about MG, and the bad drugs to avoid that your MG doctor and your MG websites give to you for advice.   You need to educate yourself and be your own quarterback.

There are three great quotes I have seen in my eBay MG  patient books that I am reading, highlighting, and dog-earing.       One…. Rest is for the Dead (but it is still necessary for us that understand rest and MG are bed partners).     Two …. I would rather Manage my Health, than my Health Manage Me!   and  three…. I can’t find my other book to quote, but it basically said that you need to find a health quarterback, preferably your primary care physician. But if he is not MG literate, they you must be your own quarterback… regarding your medications, and listen to what your gut is telling you … about how it feels … and trust your body.

 

 

[Jonathan A]

Almost everyone that I have met, has absolutely no concept about what Myasthenia gravis is.

After 8 long months of suffering, doctor appointments, tests, eye issues, etc.  ….. I was finally diagnosed by an intelligent floor nurse, who listened, and recognized my 8 or 9 MG symptoms,  that every doctor was ignoring!!!   She had patients on her floor … who had my symptoms. The next day, she gave me a four page printout  … that I still have  … over 15 months later. The papers listed all my symptoms that I have been trying to tell all the doctors … including the fact that it is worse in the afternoons  … but you can recover some if you lie down and rest.

I am currently reading my latest MG patient book that I bought on an eBay search   “COPING WITH MYASTHENIA GRAVIS – MASTERING YOUR LIFE”.    It tells the facts and history of MG and then 50 MG patients tell their backstory journey.  Then afterwards the doctor author highlights the most important parts of their story with medical facts.    The first fact sheet should be a required poster in every medical office  … and the book should be in every doctor’s library.

I was sedated, intubated, and had total hearing loss from February 5 to 27, 2020, due to bad side effects of Antibiotics.

Many go to an eye doctor, with droopy eyelids and vision issues  … the doctor recognizes a disease.  The eye doctor refers to MG patient to a known neuro-eye doctor acquaintance,  and that second doctor recognizes the possibilities, and refers the MG patient to an actual neurologist friend  …. who does tests, confirms a Myasthenia gravis illness, and get us successfully diagnosed and treated.

So I guess the first line of defense for future MG patients  … needs to be a properly educated eye doctor, as well as the public in general.  It would have not taken me 8 months to be diagnosed  … if my referral  eye doctor had listened to me and appreciated my droopy eyelids, competing eyeballs ,  and shiny streetlight holiday star light rays for what they were.

I  have never worn eye glasses until I got a pair from the Dollar Store for reading small magazine print a year earlier.  My doctor was trying to prove I had diabetes… which I have never ever had,  so she sent me to a eye doctor to prove I had diabetes eyes. He said I had a better chance of getting cataracts than diabetes  … but did prescribe 20/30 glasses for reading.   It would have been a primo moment to diagnose Myasthenia gravis…. but neither the doctor or his nurse recognized obvious MG symptoms.  I even had to hold my eyelids up for the nurse … so I could look into that black goggle box of her’s .. so she could see my eyeballs.

Many are undiagnosed  … waiting for the “one in a thousand eye doctors” to recognize and save us.  We must also educate the medical field based on personal experience  … as well as the general population.

[Jonathan A]

It is hard to know if one can go back outside and play again.   Restrictions were losing up finally with the “PLAGUE from CHINA” but now the DELTA VARIANT  is closing places again.    On my way home after giving up 9 vials of fasting blood yesterday (three requests to SONORA LABS by three doctors), I was starving and stopped at WHATABURGER  … their dining room doors were locked up (drive thru only)  … so went to McDONALDS.   Their dining room was roped off .. so I ordered inside but had to take my food home to eat.    They were open after my last doctor’s appointment before … but now they were closed again.  So I am worried about how many gyms and sports locations are closed again.

I am coming out past my comfort zone, and willing to drive further now that my eyes, fingers, and calf muscles are in MG REMISSION.  But will anything be open?   When I had time  “pre MG”, I was biking, scuba diving, figure skating, horseback riding, doing tennis, and swimming.  But suddenly having un-diagnosed MYASTHENIA GRAVIS for 8 months,  and spending 5 months of 2020 in five different hospitals, my eyes and all my other body parts died every three or so hours.

But I am in remission now (since 11-27-2020)… and want to carefully get out more and try my land legs.  I had to spend 4 long months in the first three hospitals (as they could not get me an MG diagnosis) … and they would not let me out of bed FOR THREE MONTHS.  So I had to learn to stand in therapy and walk again from the start.  Your arms do not remember to sway back and forth  … when you have been in hospital wrist restraints for the first three months … so you would not try to sleep on your side again or have horrid nightmares …..   and tear out all the IVs and feeding tubes and air hoses.

I was wanting to get back home and get in my swimming pool and soak and limber my legs again  … and swim exercise.   BUT I was in the hospital from February thru June 2020  …. and during that time …. almost all of my 25,000 gallons of Arizona pool water evaporated away  …. and I just don’t have the legs yet to whip it back in shape and get all the palm fronds out of my naked pool.   But you guys have encouraged me to try something else or try to find a pool that is not closing down after LABOR DAY.   THANKS…

 

[Jonathan A]

That MYASTHENIA GRAVIS problem hit me really hard  … and I could not attend the 50th reunion of my 1969 high school reunion in October 2019.   I had already paid to go  …. and at that point in time, I was taking each medical decline one day and hour at a time.  What was wrong with me.  I had NEVER been SICK.  I had never ever taken any pills beyond throat lozenges for my tired at times singing voice.

On July 25, 2019, my first symptoms  ….  the OCULAR MG ones … appeared …   as with every other first time MG victim.   My eyelids started dropping and I had to hold an eyelid open during the daytime to drive to doctors and the pharmacy for medications  … weak as my legs and neck were becoming.  My eyes seem to be competing to see which was better  (others say its called DOUBLE VISION  … but I was totally clueless ..along with the CIGNA eye doctor.)   At nights trying to drive home from work, I had to take the darker side streets with fewer streetlights  …. as EVERY STREET LIGHT on main roads  … was a giant CHRISTMAS STAR (off the greeting cards) shooting long rays of light rays down to me. Is this why old people don’t drive at night ?????

I kept wishing I could go to three days of events, mixers, and a football game,  as I had just attended the 50th anniversary of the school’s founding two years earlier and had a blast with all my old friends.   The girlfriends all still looked great and aged well.  The guys were going bald and/or gray  … while I still had my original full dark brown head of hair  … being Italian with a grandfather that lived to 98.  But there I was ….  taking one day at a time, trying to drive safely down to the corner to get meds, and go lie down to rest my un-diagnosed legs and eyes again.  I even googled street maps  ……   to see if there were backroad neighborhood streets to go to doctors or my 50th reunion events safely  … while holding one eyelid up to see.

For 8 months  … till March 25th, 2020,    NO DOCTOR could diagnose my MYASTHENIA GRAVIS.  Unlike other MG patients seeking a diagnosis,  my eye doctor was clueless and did not refer me to a neuro eye doctor, who in turn would have referred me to a REAL NEUROLOGIST, …. who would have recognized my symptoms, and given me TESTILON and Antibody tests   …..     and a MG diagnosis and IVIG treatments.   It was an intelligent floor nurse, after 2 months in 2 hospitals, that recognized my MG Symptoms from some of her other patients and told me what I had and got me tested after 8 months of suffering.

The 1970 McClintock High School reunion was postponed due to the “CHINESE PLAGUE” that I totally missed   …  because I spent five months of 2020 in five hospitals recovering from doctors miss-diagnosing my MG and giving me instead THREE types of PNEUMONIA,  total  speech/ hearing loss (for 4 months),  and Acute RESPIRATORY FAILURE.   One does not  give dangerous anesthesia to suppress breathing for MRIs and BRAIN scans …. when undiagnosed MG patients … such as myself, already have suppressed breathing and are choking on their own phlegm, while being forced to lie still on their backs.

So the 1970 McClintock High reunion will now be on October 17 to 20th in two months.  I am in remission and can see and drive safely at night now.   But my class was 1969, and I know so few students of 1970  … especially after 51 years.   But I am eager to get back out again  …. and see a reunion that I missed out on    … even if it is for 1970 and not 1969.

After the clueless doctors gave me BAD ANESTHESIA on February 4th,  2020, I could not come out of it.  So the nurse in recovery called a CODE STRIKE  … and I was resuscitated back to life  … and I am ready to expand my boundaries and get my life back.  I was technically DEAD  … and now I am alive.    All my 1969 classmates were asking where I was  …..  but the CIGNA doctors were totally clueless, not listening to my 8 or 9 MG symptoms, and were referring me to other doctors, based on what disease an old person SHOULD HAVE  … and not the symptoms I actually had  … which meant very invasive heart and gastric tests  … for diseases I never had.

The first two hospitals were totally incapable of diagnosing MYASTHENIA GRAVIS.   After 11 months of doing BANNER hospital paper searches online,  I found out that the  THREE NEUROLOGISTS at the first hospital totally missed my MG … and in their consult papers about my condition  ….  were guessing a stroke  …..  or toxic metal poisoning, even though by that point,  I had every one of the MYASTHENIA GRAVIS symptoms that all of us have.

SO I AM ALIVE AGAIN  …. and trying to be me again and so wanting to go  … even if I know so few from the 1970 class.

[Jonathan A]

Reply to Amy.   I was out running a few quick errands yesterday  …. as I had to pick up my replacement meds at FRYS Pharmacy.   I was not in the mood to cook dinner when I got home.  So I went to WHATABUGER.  The doors were locked  … only drive thru. I WANTED TO SIT AND EAT.   So I drove to MC DONALDS.   I got in the door. Everything was roped off.  They let me order  … but I had to take my Big Mac Meal home and eat it.    With these new DELTA variety CHINESE PLAGUE  ….  now the food places that were open two weeks ago are closed  …..  and I am in remission since November  … but the energy to take time and cook just is not there any more.

Also I am formerly from Minneapolis  … Swedes, Buffets, and Pork Tenderloin sandwiches (that you can pickup at the nearby bars and bowling alleys) are huge  along with EVERY GROCERY STORE    …. having a large cold salad/fresh fruit bar as well as a hot chicken, sausage, soup, and meat balls bar was terrific.   You could bring home a couple pounds of fresh food and eat/snack for a week without cooking.  In Phoenix … the salad bar offerings were weak, but if you had finally escaped after four months in three hospitals from your MYASTHENIA GRAVIS doctor mis-diagnoses, you were dying to get your pharmacy medications and stop over at the salad bar… but every grocery store had closed their salad bar  ….    You arrive home pooped out and laid down  … till you rested enough to get up and microwave leftovers, or a TV dinner, or even grab a few grapes to hold you over.      I MISS THAT  !!!!!

[Jonathan A]

It took me 8 months to be diagnosed with MYASTHENIA GRAVIS on March 24th of 2020.  No doctor ever was able to diagnose my MG.   I was finally diagnosed by a intelligent floor nurse at the second hospital  …. who recognized all my symptoms from some of her other floor patients.  She got me tested, treated and on IVIG.   My Neurologist of record  … at that hospital ….. who has never met me ….but whose name is on my MG pill bottles  … does not currently do patient appointments.

The “CHINESE PLAGUE” arrived in Arizona after I arrived at the first of my three hospitals Feb 4, 2020   (to June 12, 2020.)  I did not know that outside my hospital window  … a PLAGUE from CHINA  .. existed  ….. as a friendly hospital nurse “described it” … when I almost choked to death when that same nurse attempted to stick a WAY TOO LONG stick  … down WAY TOO FAR … in to a dry sore throat that had not eaten in three months (doctor mis-diagnoses did not recognize MG swallowing issues .. so I was Peg tubed for 4 months)  The nurse finally told me about the CHINESE PLAGUE” after I bitterly complained about her stick.  It was late May 2020.

So my “in name only MG doctor” would not see my body in person. Since my MG nurse diagnosis on 3-24-2020, I have had only one MG doctor  Zoom (the therapist translated as I could still not hear or speak due to Antibiotic side effects for 4 months) and then 2 phone call appointments from same MG  doctor since my release from third hospital on 6-12-2020.   I was not ready to drive 15 miles through traffic out and 15 miles back …. in my MG condition  …. if the doctor decides to SEE HIS PATIENTS AGAIN in person.

So I googled and found a new MYASTHENIA GRAVIS NEUROLOGIST close to me in Tempe Arizona.  He is WONDERFUL.   He is not like my other doctors  …. who as another MG patient said ….. “Look at you    like you had three heads” or were “CRAZY”.  He understood and knew every symptom that I had repeated for the last year  …. and did not look at me strange … and write in his website patient portal that I   “was a POOR HISTORIAN”.   He KNEW every medication that I was taking and was badly trying to pronounce.

He is GOLDEN  …..  and you must find your own great MG doctor.  He will give you printouts about medications you must avoid.   He gave me the closest to a physical that I have had in 30 years.  He tested my arms, hands, calves, neck, reflexes, pushing back arm strength, vision.   He even used a knee rubber mallet and a check ears/nose medical device  … that I had not seen in over 30 years.    He was older, than all my other referrals  … but was a REAL DOCTOR  …. well educated  … and knew his medical field and the right questions to ask a patient.

One month later,  I had a physical from my new primary doctor for United Healthcare….. as I had to switch my health care package from Cigna Healthcare when Arizona and Cigna could not reach a contract for 2020.   The men’s physical for a new patient  .. the following month  … was pretty much a “minimal bust”.   I wore a baseball jersey with front buttons. I undid the buttons.  He used a stethoscope, felt my abs, and that was about it.  No instruments, no hammer, no ear, eye nose, mouth look see.   His nurse already did the weight  … which was 10 pounds higher than in the morning without clothes.   Also she did the usual “white jacket blood pressure” reading three minutes after I was in the exam room  and still talking/explaining my visit with legs crossed  … so “her OFFICIAL BLOOD PRESSURE READING”   was over 20/20 points higher than my personal blood pressure cuff reading I recorded   … when I left.        So my first annual, new patient physical was rather a “non-event” and I doubt he even recognized my healing chest PEG tub hole, my deep slit throat wound (TRACH),  my IRRIGATION/DEBRIDEMENT procedure from my swollen septic bursitis infection, or my back wounds from the first practicing hospital NEUROLOGIST that took “9 attempts” according to Banner documents downloaded  …. to complete MAYBE a lumbar tap.

SO GET THEE TO A  …. real order  ……  practicing MYASTHENIA GRAVIS NEUROLOGIST.  HE IS GOLDEN!!   … and will protect you from other clueless doctors, who believe quantity of patients is better than quality of patient care.  I am still getting blow back from my other doctors  .. who poo poo my feelings, when I try to explain my immune system is TOAST due to over 2000 mg of immune supressant drugs    ….  and NO  …. I do not want any invasive “searches’ and “tissue samplings” for some unspecified/undeclared needs of yours  …. when four other doctors have me on five blood thinners and anticlots  … even though I have O positive thin blood  … and a clear Cardiac Catheterization test.  I can not afford to fall out of  MYASTHENIA GRAVIS REMISSION  … due to 3 to 4 days of blood coming out and possible infection  …. on your whim  … that my immune system can not protect me from.           P.S. I already died once from a bad choice of using anesthesia … on a patient that already was exhibiting suppressed breathing.

I have bought and read  …. since my MG diagnosis …  Ebay purchased books by several  MG patients and MG doctors, who also were themselves MG patients.    Some have said that you need to have a primary care doctor  ….. be your QUARTERBACK to referee your care, your meds, and your cross interactions/side effects   …. which  I have not seen really happen yet in my case with over 5000 mg of pills and a syringe daily of 14 different meds.   Other MG specialists say.  Research as much as possible, check out support groups, read websites, such as this,   and  TRUST YOUR GUT  … and  REACH WAY DOWN … and see WHAT YOUR BODY IS TELLING YOU.

CHOOSE YOUR DOCTORS WISELY.     YOUR LIFE DEPENDS ON IT  !!!!!

[Jonathan A]

MYASTHENIA GRAVIS has really stopped all my fun  … but as I get farther away from my last MG Crisis, I am starting to relax a bit and start venturing out of my comfort zone.  I started showing MG eye issues, dropping eyelid problems,  quickly followed by weak arms and  fingers, legs wanting to melt,  and a neck that would weaken and dump my head to my chest.  It started on July 25, 2019.

After 6 months of Cigna Healthcare doctors and their referrals, without any diagnosis,  I went to a Banner Hospital Urgent Care Center and they failed me too.  I was finally diagnosed  on March 24, 2020 ……   after 8 months of searching for my disease and released from the third hospital on June 12, 2020.   From my first weaknesses, thru 4 months in three hospitals, and many months later,  ….. I was TOTALLY SCARED STIFF.  I stayed at home as much as possible  … only leaving hesitantly to go to doctors appointments and to the grocery/pharmacy store.  At the grocers/pharmacy  ….  my head would dump, and my legs go weak  … so I had to sit in the deli and pretend to read the store ads  … in order to put my head on my hand/arm and rest my body.

After having to return to hospitals #4 and  #5 for the month of November 2020 for an IRRIGATION/DEBRIDEMENT operation for Septic Bursitis redness and swelling of my arm, (as my immune system is TOAST from all my MEDS), I was finally released again  on November 27, 2020  and have been in totally remission since then  …. except for total ONSET INSOMNIA and Bicep/Back Shoulder Muscle Pain.

So as I get more confident about my disease, and its effects and the MEDS side effects,  I am now comfortable about driving longer distances around town,  and also have restarted driving at nights now  ….. that my vision and eyelids are back to normal since my 3-24-2020 IVIG treatment and 14 new  MEDS.    BUT IT STILL SCARES THE HELL OUT OF ME  … to go out of my expanding comfort zone.   I can never ever leave town or travel out of state EVER AGAIN.   I was extremely lucky that these last TWO YEARS OF SEARCHING AND MG HELL  … were in town.  I knew where my pills, the doctors, and the hospitals were, and could call my sister … if I melted again.   One time, after leaving a doctor’s appointment, where the doctor continued to be clueless about the 8 of 9 unknown MYASTHENIA GRAVIS symptoms, I returned to my car and my right hand was too weak to grip and release my car’s parking brake,  ( I finally hit the button at the end of the release lever with a cream of chicken soup can  … and the brake lever released and dropped)  so that I could drive back home and go back to bed.

If I flew to San Diego again for a trip or a vacation  … and I had a MG crisis  …. where are their hospitals, how would I get to an Urgent Care, get my MEDS, and find an intelligent floor nurse again  … who knew what  “MG” means in ENGLISH?  In February 2020  …. I already DIED, and had to be RESUSCITATED at BANNER URGENT CARE  …. when they gave me ANESTHESIA to stop me moving for MRI tests (as I was flat on my back, choking on my own phlegm  … and I did not come out of ANESTHESIA and the nurse called a CODE STROKE.)     If Urgent Care admits me to their hospital  … when I am “OUT OF TOWN”  … who will check me out of my motel, return my rental car, hold my motel belongings, and get me out of the hospital, and on a plane home.  I AM GROUNDED NOW FOREVER.  The risks for me is too great  …   I  have very thin O positive blood  .. but I am on 5 blood thinners from 4 doctors, as well as taking over 2000 mg of CELLCEPT  to make my immune system TOAST …..  so I can’t RISK  INFECTION or BLOOD LOSS by probing doctors  … looking in the wrong direction, exposing me to contracting three varieties of PNEUMONIA in ICU,  and giving me DANGEROUS STATINS, STEROIDS, ANESTHESIA, and ANTIBIOTICS  again …. sending me back into another MYASTHENIA GRAVIS CRISIS   … to say nothing about the”HORROR STORIES” of financial ruin  … if they decide you need a air vac ambulance pickup.  So STAY CLOSE TO HOME,  WEAR AN MG MEDIC ALERT BRACELET, and don’t LET THEM SEDATE YOU EVER  ….    ….. SEDATED VICTIMS can not tell the clueless doctors what your symptoms are, that you have MG, and there are countless “BAD MEDICATIONS” that will make the situation even WORSE  … such as nurses having to call a CODE STROKE, and a priest for LAST RITES a second time..

[Jonathan A]

My MYASTHENIA GRAVIS symptoms first appeared a little over two years ago on July 25. 2019.   For EIGHT LONG MONTHS,  ………      no doctor was ever able to diagnose my MG. Finally a floor nurse at ST. Joseph’s hospital recognized all my MG symptoms and got me treated.   So ever since I got my freedom and out of the five hospitals    …..     I have been googling words, tests, medicines, symptoms, and MG websites for answers to my ENDLESS questions.

You find the symptoms of MG and all the side effects of your 14 medications,  ….. but it is still hard to say what particular “item” or pill or symptom causes what.  If you have watery eyes  …. you see what pill or symptom it matches.  So far, my biggest problems are sore biceps/shoulder joints   and a total insomnia problem  … taking forever to fall asleep.  So I continue to seek answers and ask questions, and occasionally move forward or backward the exact time I take my am/noon/pm pills  …. and see what happens  …. as some say the Pyridostigmine you take three times a day  …  is only effective 4-6 hours  …. whereas Flecainide you take every 12 hours …   they say it lasts longer.   But except for A REAL MYASTHENIA GRAVIS NEUROLOGIST on your team  …. no other doctor knows SHIT about your MG.  THEY ARE ALL CLUELESS to an UNKNOWN DISEASE>

I just had another doctor today, a piss/poop type of doctor referral, try to get me to take an invasive test, up my butt and/or urine tract for a “look-see”, and then let them take  6-12 “biopsy tissue samples”  from my sedated helpless body.   Neither this doctor ..or his coworker … who wanted the same result  …. could understand my negative reply.   NO NO!!!! I am on blood thinners and immune suppressants for MG.   I can not afford to get a INFECTION or a BLOOD LEAK  …. and spend 5 more months in 5 more hospitals   ….  and have again 4 months of TOTAL HEARING LOSS  ….   due to antibiotic “SIDE EFFECTS” from you damaging my insides …   for no plausible reason at all   …..   or giving me an ANESTHESIA    to “depress my body movement  and   suppress my breathing/feeling” during such invasive testing lying flat on my back … and chocking on my own phlegm again.

THEY DID NOT UNDERSTAND THAT MYASTHENIA GRAVIS ALREADY SUPPRESSES/STOPS MY BREATHING !!!!  (it was called ACUTE RESPIRATORY FAILURE … and the nurse called a CODE STRIKE  … to resuscitate my limp body back to life)

SO GET AS MUCH INFO AS YOU CAN  …. from REPUTABLE MG PHYSICIANS   …. and stand your ground against CLUELESS DOCTORS  …. who have no idea about what MYASTHENIA GRAVIS IS … and what MEDICATIONS need to be avoided at all costs.

[Jonathan A]

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 REMISSION NOW.   But my problem is ACUTE ONSET INSOMNIA.  I have never ever had that problem before, and no one seems to talk about it.  It takes hours to fall asleep, but you wake up too early, and it takes hours again to fall back asleep, if at all.

Some people say maybe it is the side effects from 11 medications, CELLCEPT  (2000 mgs daily) and MESTINON (180 mgs daily).    …. or is maybe INSOMNIA is a side effect of having MG ????

I did get referred for two “IN LAB” sleep studies, but they never talked to me. I gave them my illness info and my meds list,  but I don’t think that they EVER MET a real MYASTHENIA GRAVIS victim before.  They just wire you up and put you to bed.  My report said I got no minutes of REM the first time and 11 minutes of REM deep sleep,  the second night.  But it did confirm that I could not get asleep, slept ALWAYS on my SIDE,  and breathed in and out through my nose, and NEVER SNORED.  They billed my medical plan for $3600 per night  … and no answers.

 

 

[Jonathan A]

I have had MG since diagnosed on 3-24-2020  … and have been taking MESTINON (3x 60 mgs daily) and CELLCEPT   (2 x 1000 mgs daily) only since then.  My nasty Steroid PREDNISONE was tapered and killed in November 2020  .. after horrid side effects of huge weight gain and high to the roof blood sugar readings.  I am in complete MG remission  … knock on wood  .. for a year now.

But my instructions and warning sheets for CELLCEPT do say that it could cause low red and white blood cell counts on your blood tests.  But CELLCEPT has kept me in complete remission for a year now  … without any side effects except acute onset INSOMNIA.   The jury still seems to be still out on  …. do you have INSOMNIA due to the side effects of MG (ie muscle pain)  … or the side effects of MG medications.  A possible question for future MG forums.

From some earlier MG readings, I saw that California MG Foundation was funding research on this topic at Univ of California at Irvine.  Has anyone heard of their progress on a answer for us ?????

[Jonathan A]

It took me 8 months to finally be diagnosed with MG on 3-24-2020  … but it was by a floor nurse, who had patients that had all my symptoms.  Every doctor who saw me was uneducated neurologically  … including three Banner neurologists. In my case, I lost 43 pounds in the first 6 months,  searching for my disease.  If your doctor does not have you on CELLCEPT,  ask about it.

The STEROID PREDNISONE IS REALLY NASTY   .. so try to get tapered off that as soon as your doctor can do it.   PREDNISONE sends your blood sugar to the roof  … and it is  famous for causing MG patients to gain 40 to 60 pounds of weight gain.  So you will gain much more than the 40 pounds you lost.  Ask your neurologist for his expert opinion.

[Jonathan A]

I know exactly how you feel.  For 8 months, I was undiagnosed by every doctor who saw me.  I was correctly diagnosed by a floor nurse at the second hospital, who had patients who had my all my symptoms.  So it got to be impossible to raise my arms to string my clothesline or hang my wet clothes on it, or even trim low branches on a tree.  My arms were too tired to raise over my shoulder joints and there was also NO STRENGTH in my hand grip.

But I have gotten around the Christmas tree problem.  I use smaller trees  … about three or four feet high.  Each in a different room.  One pink (Grandma’s favorite 60’s color), one Disney ornament figures and lights, and a traditional one with glass balls and lightweight tinsel.  You decorate the top half of tree, when it is on the floor and you are sitting down at the dining room table with your decorations laid out.  Then have someone put the tree up on a corner table … and you can finish it place.   Also takes less energy and ornaments, as you can leave the unseen back of the tree naked.  Also it is festive to decorate several rooms.  Even one to enjoy in the bedroom on a timer  … or a remote to turn off in bed.

 

[Jonathan A]

Reply to Ella.  Since my MG diagnosis, I have found, bought, and read several good, first person accounts of their journey to an MG diagnosis.  All the books but one were excellent and double the price I paid for them.

One book is    ATTACKING MYASTHENIA GRAVIS  by Dr. Ronald Henderson.  He is an experienced baby physician, and started getting all the MG symptoms, but could not piece them together for a diagnosis.   When he finally started getting chewing and swallowing issues, he realized that he probably had Lou Gerig’s disease and announced it to his family.  The book tells the journeys of the baby doctor, as well as three friends with MG that tell their journey to MG also …. one is another doctor, one is a southern minister, and the third is a high school coed … who is now in college and a NEW JERSEY activist and chapter president of the NJ support group.  All four said they also  …. have gained like me  …. up to 40 lbs  … by being forced to take PREDNISONE.

Later when he did research further, he realized that his diagnosis did not match up with ALL HIS SYMPTOMS   …. so he finally called his Neurologist associate to book and appointment and tests ….and found he had MG instead.

So some people  … such as your ex  … may assume things  … but MYASTHENIA GRAVIS is so so rare  …. that even these two doctors could not correctly self diagnose. I understand from personal experience that doctors have general knowledge  …. but with such specialization these days  …. most doctors can be clueless about rare diseases.    It took me 8 months to be diagnosed.  EVERY DOCTOR who saw me failed.  I was finally diagnosed by an intelligent and observant hospital floor nurse  … who saw my many MG symptoms firsthand  … and recognized my problems from similar symptoms with other patients at her hospital.

My mother had also a different undiagnosed illness.  The doctors could not identify her disease  …. so they discharged mom to a rehab facility.  Another great HOSPICE nurse at mom’s facility  ….. recognized her symptoms also  … and got her tested so she could get the correct medications.  Unfortunately  … the correct meds worked for mom …. but her body had already started shutting down … and it was too late for mom to recover.

So people can believe things … but medicine is so complicated these days  …. that even our own doctors  ….. do not comprehend things  …. when we try to explain to them  …. that  … we, as MG patients,   can not tolerate certain drugs and procedures that they administer to mainline patients.

So be safe, stand your ground,  and stay healthy  … and in remission also.