[Jonathan A]

I was undiagnosed with MG by every doctor who saw me  (I was finally diagnosed by a floor nurse whose patients also had all my symptoms).  I finally got to  the MG swallowing problems … as one of my last undiagnosed MG symptoms.   So  I bit my lip, cancelled my CIGNA appointment, and went directly to URGENT CARE at a nearby Banner Hospital to find someone who could diagnose my 8 or 9 symptoms.    I had been doing fine eating till then.  What worked best for me was just naked crushed ground beef that I usually made to put in spaghetti sauces, instant packs of microwave oatmeal cereal, and right out of the can canned tuna.

Then I got in real trouble.  I kept getting Phlegm ?? in my mouth.  I tried to swallow my pills along with the foods listed above  …. and they all came back into my mouth in my Phlegm ??  … as if a ledge or ??? behind my tongue was  keeping me from swallowing and the food going down my throat.   Then the kicker  ….   I seemed like I was getting Campbell’s Chicken Noodle soup up my nose  … and not down my throat.

My earlier BAD symptom was in the evenings  … my right hand/fingers were too weak …after a while to eat my dinner.   I had to either put my dinner into the fridge and lie down and regain my strength  ……   or use my left arm/hand to hold up my right hand/fingers to finish my meal.

[Jonathan A]

THANKS FOR ALL THAT YOU ARE TALKING ABOUT  … REGARDING IVIG.

These discussions give me much needed information about other patient’s experiences with IVIG treatment.   It took me 8 months to be diagnosed, put on meds, and be given 5 days of IVIG treatments initially.  I realized that IVIGs must be DANGEROUS … as the first time it happened to me, the lady technician pulled up a chair and spent over five hours in the doorway of my hospital room the first day.   I assumed she did that …..  to either call another NURSE CODE STRIKE  … or rush and stop what they were doing to me  … if I had a terrible reaction.

I had died already at the first hospital.  I did not come out of the anesthesia they fed me (to do MRI/CAT tests) and they called a CODE STRIKE and I was resuscitated.   Because they did not recognize my MG (suppressed diaphragm breathing) … they doubled down by giving me an anesthesia to suppress my breathing and my movements from breathing choking. They did not recognize that MG patients have phlegm, swallowing drools, and can not be flat on their backs with no neck support.

After 5 months in five hospitals  ….. being stuck in my bed for three months, being on hoses and IV’s for five months, being on no food eating (on enteric and PEG tube feeding) and urine foley catheters for three months, and on leg and wrist restraints tied to my bed rails  for six weeks   (self ex-tubation said some reports  …. more likely my HORRID NIGHTMARES)    …… I was freaking out  … worrying if I would have to return to the horrors of a COLD HOSPITAL room to get more IVIG treatments.   At least it sounds like from these letters  … that while I will probably need more IVIGs …. at least if an outpatient  … I would not be trapped inside multiple hospitals again.  THANKS for  information on what you have encountered with IVIGs.  A potential return to hospitals for a IVIG treatment or  second septic bursitis infection MG crisis (from my toasted immune system) still has me freaking out.

I do not know how to say how effective my IVIG was and about its side effects  ….. as I don’t know if it is the IVIGs  ….. or all my daily drug MEDICATIONS and syringes that keeps my MG SYMPTOMS in check for now   …. or continue my bad side effects.    I do not know about if I had any NAUSEA  ….. as after my first IVIG treatment, it would be another 6 weeks before they would let me try to attempt to sit up at the side of my bed, and attempt to stand.  It would take weeks of therapy to relearn how to stand and walk again  … after all that time restrained to bed rails.

[Jonathan A]

I was undiagnosed for 8 months  …. and kept getting weaker and weaker in my leg calfs  … especially when out in my yard trying to trim roses or water.   I had already “melted into the floor” inside my house  …. then slid down the door sill to the floor, then laid down to rest on carpet till had strength to crawl to a chair or sofa arm to get sitted … then rest again for elbow/arm strength to stand.

So I tried not to go outside  … or tried to walk quickly to my front door frame  … before I slid down it to the sill and rested   ….. if I was outside and noticed the slightest hint of my leg calves weakening.

Also I have learned to keep at least one ski pole in each of my cars for trips to doctors  … or trip to the grocery store parking zone for a shopping cart.     The ski pole has the advantage also of you can sit on a bench or chair on walk to doctor’s waiting room/office  … then you can rest your chin/head on the top of the ski pole   … when your neck muscle suddenly dies and can no longer hold up your head.   Most ski poles have screw on bottoms  …. so you can screw on a rubber, a icy sidewalk spike tip, or a round powder snow disk.  Also you can adjust the height of your pole.  They also come in many metallic colors  ….  and do not signal  … oh there goes an old fart  … as MG patients come in all age groups.

That is a problem  …. because I have had countless clueless doctors . …. who didn’t LISTEN to my MG symptoms  …. and ASSUMED I had an “old person’s disease” and never could diagnose my MG   … I even had  .. according to the hospital consult reports  two NEUROLOGISTS and a NEURO SURGEON fail me  … and send me to a second hospital. I guess they skipped class the day Neurology and MG were discussed in medical school

[Jonathan A]

You guys seem to be very lucky.  You have found out what tests they did to you. I was undiagnosed with general MYASTHENIA GRAVIS  … starting with hand and calf leg weakness first along with all the Ocular MG symptoms.  The doctors in the hospital did not tell me anything, rarely saw them (usually if at all  ….   6am walking out the door on a quick turn)  and the nurses could only answer all my med questions.

Now my new MYASTHENIA GRAVIS doctor   … I found  …. He actually let me set up an appointment and a followup to see him  ….   “a real, live doctor” in person (the consulting hospital neurologist that prescribed my Prednisone, Mestinon and Cellcept only does ZOOM and phone calls  .. so I never met him in person).  So now my new MG and me are facing roadblocks … We can get no reports from the second hospital that finally had a nurse that finally diagnosed me with MG  ….    after week 4 of my stay at the second hospital.

I actually signed up for ALL STRIPES to help in searching for tests the five hospitals  did on me ……   if I was ever tested for MG or not.  I had 5 days of IVIG treatment and chest X rays after the first hospital gave me three types of PNEUMONIA.  I do not remember getting a Tensilon ?? or any wired muscle tests.

Finally my weekly visiting nurse let me in on a little secret of the MEDICAL COMMUNITY  .. and how you can find a way to get into corporate health portholes and find consultant and discharge papers, x ray results, and lists of  Morphine, diuretics, anesthesias, antibiotics  (that gave me 4 months of hearing loss that I was fed in the hospitals) and 60 other drugs.    So 11 months after my IVIG treatment I am finally getting some of my test results to give to my MG doctor  … who has been put off also.  This week I finally found the three Acetylcholine Antibodies tests  … all high … BINDING 3.5  8.1  8.7     Blocking 59%   50%    Modulating 81% as well as CO2 and Ammonia levels way high also. Now I need to get these to my new MG doctor for translation along with the X ray reports that seem to indicate they never went looking for a THYMUS  … as they were interested more  …   it seems in the three PNEUMONIAS that I contracted in ICU after  newly found out (to me) my collapsed right lung,  ACUTE RESPIRATORY FAILURE, and being dead …. that they did not tell me anything about either.

So it is SUPER IMPORTANT to locate those hospital medical papers any way you can     .. as you will need them for your own doctors.  My new doctors wrote me up  …..   to go get lab tests done a SONORA LABS Testing.   SONORA has a great patient PORTAL.  They tell you the results of all your tests, as well as which are low and which are too high  … as well as why some of your test scores are off and why.  Doctors only tell you to fast from food  …. SONORA tells you about PSA, Blood Sugar, and other tests.  There are also “ACTIVITIES”  … besides no food or drink,  such as sex, exercise, hand jobs (to make ones self sleepy when have rampant insomnia from your meds), bike riding, a DRE exam, or motorcycle riding that YOU DO NOT DO  ….   before some of your tests   …. as it will skew the results  …. just like the neurologist that took  ” NINE  ATTEMPTS” in a short time frame to do a Lumbar Puncture on my back.  When I went to the medical websites  … I  went to find out …after the fact  .. what was a lumbar Puncture  …. as I was never told I got one.  the websites say only do three PUNCTURE attempts per day  … any more than three tries in a day  .. will screw up your test results.

But the total welcoming surprise to me was  ….. SONORA LABS had not only the tests results for the 9 vials of blood I gave them a few days earlier in 2021….  SONORA LABS also had on my own patient portal 18 tests and their results/analysis  …. for blood workup and blood draws at three of the five  hospitals I was confined in from  almost a year earlier   …..    from 2020.  The three hospitals took my blood, had SONORA do the tests, and now 11 months later I am finally finding a way to know about the tests they did on me and what the results were from SONORA LABS  ….  not from the three hospitals or their doctors who removed my blood.

SO GET THE TEST RESULTS ANY WAY YOU CAN … your own doctors will thank you  … as they are getting blocked also.  Also beware of MRI’s and Cat Scans.   I  had ACUTE MYASTHENIA GRAVIS that was undiagnosed with all the MG symptoms  … including trouble swallowing, phegm in my mouth, trouble being flat on my back, an unsupported neck, and having a weak breathing MG  diaphragm muscle. They gave me anesthesia for the tests to SUPPRESS MY BREATHING and keep me still  ….  totally clueless that I was already in breathing distress.  When I was taken to post anesthesia recovery care,  I did not come out of it  … the nurse called a  CODE STRIKE. I was finally resuscitated  and sent to ICU …where I contracted three types of PNEUMONIA, was given ANTIBIOTICS, and from that   …  had total hearing loss for 4 months from the side effects of those medications.  I found all those reports 11 months later  …. when my home care nurse told me how I could find “PORTHOLES”  … to finally find the reports and test results of what they did to me, and why I arrived at a second hospital sedated and in bed wrist restraints late one night.  The newly discovered consulting and discharge papers mentioned “self ex-tubation” at times.   No wonder I was having nightmares.

Also those same reports said almost always  .. that the patient information was taken from the medical charts.  Reading further into the newly discovered consulting reports  … one would find that I was either   …. sedated  … intubated  ….. or groggy for almost the entire month of February 2020 at the first of three hospitals. Also my brother … Paul being Paul  … took phone photos of my situation  … so know I know about the continuing nightmares at that hospital and their reason.  All those air hoses and IV’s around my face, neck, and arms  ….  and being wrist restrained to to my bed rails with white nylon luggage straps.

[Jonathan A]

When I first started showing MG symptoms  … I went straight to the doctors  .. for answers as the symptoms kept increasing  … with hand finger grabbing weakness, sore weak calf leg muscles, and every street light at night  …. being a “CHRISTMAS STAR” off a Christmas card sending twenty foot rays to light down in front of the road.   So I tried not to drive at night and stuck more to residential streets with less lights.  But that affected my work schedule.

But because no doctor (including three hospital Neurologists) could Diagnose MG  … it took 8 months for an observant floor nurse to recognize my  OCULAR MYASTHENIA GRAVIS symptoms right away from other patients she visited.  So I am remission  ….  but I WORRY.

Will my symptoms come back, will my head dump down from a weak neck again, will my legs melt into the floor, can I ever fly out of town, or drive far away again?   Where is the nearest hospital/urgent care?  If I have to go there  …. who will check my stuff out of the hotel or return my rental car?  Would someone take the stuff in the hotel to my hospital to me?  So I am basically GROUNDED. I see in MG web pages that other MG advocates and local support leaders travel  … but they must travel in groups or with a companion  …. I asume.   Knowing what undiagnosed MG has been like for 8 months  …. it seems too RISKY to go out of one’s comfort zone.  When you are taking 2000 mg of immune symptom suppressants … it would not take much to pick up a SEPTIC something again and floor me for another November in two more hospitals.  Is there a secret way   …. or do you just stay close to home  … as much as possible and allow for rest  ….. as there is always tomorrow to finish your stuff?

[Jonathan A]

I have Myasthenia Gravis  …. but except for the Month of November 2020  (septic infection from a toasted immune system  from too many immune supressant medications) …. I have been in remission  for over a year now  ….  and most of my symptoms have faded away  … KNOCK ON WOOD.                          My problem was with my care provider health plan.    It took 8 months from July 25, 2019 to March 24, 2020 to get a diagnosis for my MG and be treated.   I was finally diagnosed by a floor nurse at St. Joseph’s Hospital,  as she recognized I had all the MG symptoms in many of her other diagnosed ward patients.      My health care providers were TOTALLY CLUELESS.   They looked at my patient forms and saw….OH HE IS 68,  even though I look much younger  … no wrinkles and still my full head of dark brown hair  … same color  … no gray … not receding.   They ignored all the 8 or 9 MG symptoms that I described  … and how they were WORSE in afternoons unless I rested.     So instead   ….. I was tested as if I were elderly.   One new referral doctor … actually asked me if I DYED MY HAIR.    NO NO NO !!! only two of my younger Irish side brothers have their blonde hair specked with gray  … my other Italian dark hair younger brothers have no gray hair.   INSTEAD OF LISTENING TO MY SYMPTOMS they tested my for OLD PEOPLE DISEASES  …. assuming I had  diabetes, high blood pressure, gout, cancer, blood in my piss and poop, prostate cancer, GERD, Acid Reflux, and heart chest pains.   I was referred to a heart specialist, and had to undergo three very invasive heart tests  …. including a CARDIAC CATHETERIZATION  … where they cut into me and pushed a camera up an artery in my crotch  … after they shaved me.     I passed the heart tests fine  ….  but they were clueless to what all my symptoms were … and sent me back to CIGNA for them to try again to diagnose me.   But CIGNA was still trying to prove I had Diabetes  … so referred me to a foot doctor and an eye doctor to prove to themselves I must have Diabetes.         The HEART SPECIALIST wrote I was a “POOR HISTORIAN”  … as he could not understand that all my 8 or 9 symptoms could be just one disease of MYASTHENIA GRAVIS.  That doctor’s comment on his report soon spread to other documents that I later found on Banner portals that other doctors repeated.   After 6 months I went to a Banner hospital urgent care and was hospitalized for 4 months  …. as it took them the first 2 months   … for a floor nurse  (AND NOT A DOCTOR) to recognize my MYASTHENIA GRAVIS.              SO BE DIRECT and go elsewhere when you are being age discriminated   … and hopefully you will also find an intelligent and compassionate nurse WHO WILL LISTEN  … and not prejudge you.

[Jonathan A]

I was positively thrilled when I was finally diagnosed with MYASTHENIA GRAVIS.   It took me 8 months of searching for a reason for my weakness and all those symptoms.  I have never been sick or even taken a pill except for an occasional throat lozenge.              No doctor could diagnose my illness even though I told him my 8 or 9 symptoms  … and they usually got worse in pm …unless I laid down and rested.

My healthcare provider was a total loss  …. and thought I had just an old person’s illness and referred me to other doctors and the WRONG TESTS to try to verify their guesses of GERD, GOUT, Acid reflux, Diabetes, High Blood pressure, prostate cancer, blood in my poop, blood in my piss, heart chest pains. etc.  They would not listen to all my symptoms and do APPROPRIATE TESTS.

At 6 months and getting sicker, I cancelled my CIGNA appointment and went to a BANNER hospital urgency care office.   No doctor….. even three consulting neurologists were close to getting MG.    Instead they gave me anesthesia for MRI and CT tests  … that ” muscle suppressant IV” sent me into a deadly tailspin  ….. as my actual MG was already suppressing my diaphragm breathing which was aggravated by being flat on my back for tests.      I never got awake in PA recovery.  The nurse called a code stroke,  I was resuscitated and sent to ICU  …. where I promptly contracted three types of PNEUMONIA. They totally failed to diagnose my MG  from 2/4-27/2020 …. so instead they slit my throat, gave me a TRACH and a PEG tube and sent me in a late nite ambulance to a second hospital for LTAC.

For 4 more long weeks the second hospital failed to diagnose my MG.    After 8 months of suffering and every doctor being totally clueless  …. I found my angel   … an intelligent and caring floor nurse … who saw my symptoms and wrote on my notepad.  “I KNOW EXACTLY WHAT YOU HAVE.    WE HAVE PATIENTS RIGHT HERE AT ST.   JOSEPH’s HOSPITAL THAT HAVE ALL THE SYMPTOMS THAT YOU HAVE.      YOU HAVE M.G.”       the next day I got from them a computer print out from website http://www.uptodate.com called MYASTHENIA GRAVIS – THE BASICS.  She saw that I was tested, got IVIG and was on medications.    I WAS SO HAPPY I HAD A NAME FOR MY DISEASE.     All the symptoms on those pages matched my symptoms as well as the OCULAR M.G. symptoms that that TERRIFIC  FLOOR NURSE recognized right off   … hand holding up droopy eyelid, one eye closed to see better.  and the right arm holding up my weak hand, holding up my left eyelid to see tv.

I had to communicate with the nurse by my yellow pad because the first hospital gave me THREE PNEUMONIAS …. that they gave me ANTIBIOTICS to cure  …. that gave me total hearing loss and loss of speech for four months at three hospitals till I way finally released on 6-12-2020 from third hospital.  Previously due to CIGNA referrals, I was sent to a heart specialist for three very invasive tests  … including a CARDIAC CATHETERIZATION  .. through my now shaved crotch …when the wrist vein entry of a camera thru my right wrist failed.   That doctor wrote in his report that I was a “POOR HISTORIAN”, said my heart was fine, and sent me back to CIGNA ….. that they would need to properly diagnose my 8 or 9 symptoms.  The doctor just could not comprehend that my 8 or 9 symptoms were all one disease MYASTHENIA GRAVIS.    I now had a name and medications so that I could finally be in REMISSION for a year now.     Do not accept clueless naive doctors … keep looking for your diagnosis.  It is MYASTHENIA GRAVIS >>>> YOU NOW HAVE A NAME  … as well as a Med-alert wristband  … for all the new clueless doctors … should you ever be sedated or speechless or suffering from their induced 4 months of TOTAL HEARING LOSS.

[Jonathan A]

I had never ever gone into a hospital in my lifetime.   After 6 months of searching for a diagnosis for all my 8 or 9 disabling symptoms and eye issues too, I cancelled my upcoming Cigna appointment and went to Desert Sam Hospital URGENT CARE to get a DIAGNOSIS.  They could not diagnose me  … made things WORSE  … transferred me to two other hospitals.  I spent February 4 to June 12, 2020 in three hospitals for over 4 months.  The nurses very nice and understanding, especially when Antibiotics given caused total hearing and speech loss for all four months, ..necessitating communicating by paper pads and white boards/markers. So my take away…….

BRING A BLANKET  …very cold rooms and tiny thin flannel 50″ by 50″ pseudo bed blankets.  I needed to keep asking for two blankets EVERY NIGHT….. one for bare, cold legs and feet  … other wrapped around my neck & shoulders to keep warm all my exposed neck, short sleeves, and open gown back.  ALSO A WARM ZIPPER FRONT OVERSIZED HOODIE for cold nites  …. and even COLDER THERAPY ROOMS !!!!

BRING YOUR PAPERWORK & EXTRA COPIES  ….  of all medicines, contact numbers, and documentation of all the tests, emails to doctors,   and symptoms of your unplanned illness.   After 8 months of undiagnosed MG,   and  complete loss of speech and hearing for 4 months  .. due to Antibiotics side effects from contracting three varieties of PNEUMONIA in that cold first ICU, a floor nurse at St JOSEPH’s hospital FINALLY recognize my OCCULAR M.G. Symptoms trying to watch TV  …. and I gave her my email and papers of my symptoms  …. and she diagnosed and read my M.G. symptoms right off … and got me tested and IVIG Treatments.   The doctors in the outside world had just BLOWN ME OFF …as a “POOR HISTORIAN”   … as I had too many symptoms for one disease….. even three neurologists consulting at first hospital were CLUELESS about M.G.

BRING EYE MASKS   … they NEVER close the room door (bright hallway lights enter), turn off lights when they leave, or close a bathroom door (leaves the light on)  … so can’t sleep  … or turn on side away from light source.

BRING YOUR 7 inch computer notebook and  cell phone …..  along with an extension cord, charger, and list of your banking codes, family email addresses/phone numbers, and websites.  I was trapped for 4 months SUDDENLY by one trip to URGENT CARE.   My bills needed to be PAID ON-TIME.  For the first 6 weeks I was wrist restrained to bed rails … ?? nightmares of being trapped- Banner reports of “self intubation” ??  found a year later  ..on websites with help from my home care nurse.

BRING YOUR notebook with its camera  …. for three months,  they would not let me drink or eat ANYTHING  … all by tubes.   It was NASTY  … all those damn food ads on tv.   When I finally passed the OREO COOKIE TEST (camera up your nose to see if you could still eat and swallow), I took picture of each meal for three days in memory of my STARVATION.   Also photos of all the cream of condensed mustard soup poops on my blankets  …. to remind my self  NEVER  EVEN AGAIN.  Nurses not great at condom catheters. They  keep falling off as soon as you put any “p” into them  …. one huge very wet mess  ….. especially when my wrists were strapped to the bed rails and my feet and legs were pushed together  .. and locked into these white ski boots attached to the footboard of the hospital bed. (Later computer googling said the boots were an English invention to keep blood circulating in legs  … that were imprisoned in hospital beds).  So all the wet condensed soupy poop had nowhere to go but UP between my legs onto my font side, sheets, and blanket   … and I have the notebook camera photos to prove NEVER EVER AGAIN !!!!!

HAVE A BROTHER TAKE phone photos  … that is how I finally found out my nightmares were real not dreams.  They did  wrist restrain me  …. so I could not escape or sleep on my side  …. or get rid of the snakes encircling my chest and neck.

PLENTY OF PENS,  PAPER PADS, two spare reading glasses,  along with a holder/case.   YOU ARE TOTALLY BORED and they keep pricking your finger, giving you shots & pills, drawing blood, do portable X-Rays, and metering you  … even at 5:15 am after you had JUST FALLEN ASLEEP…. after a bad night of people leaving doors open and turning on lights.   A EYE COVER MASK IS ESSENTIAL  …. or ask the nurse for a hand towel every night as a mask.

BRING SMALL,  DISPOSABLE BOOKS to read  …. You are BORED …. your time is measured …. waiting for the next MEAL  … if you ever get one … three months later.  Also there is a lot of useless SHIT on TV  .. trying to pass itself off as “entertainment”.  When you still have UNDIAGNOSED MYASTHENIA GRAVIS  …. after the first two months in two hospitals  …. your eyelids get very droopy … and your fingers/forearm is too weak to hold your good eye open for long period of time  …. to see the far away tv.  Ask the ACTIVITIES NURSE for an old magazines to read …. from downstairs  …. if you are wrist restrained in cuffs for two months also and they won’t allow you to get out of bed to eat or go down and be entertained by other trapped victims and activities support people.

INSIST ON A WEIGH -IN for every THERAPY ROOM VISIT.   In the first 6 months of my search for a MYSASTHENIA GRAVIS diagnosis  … I lost 43 pounds … then more when I was not allowed to eat any real food for three months  … but ballooned up when they started piling PREDNISONE in me …. adding weight gain, acute insomnia, and precipitating diabetes …which I never ever had.

CALL BUTTONS ARE VERY INEFFECTIVE  … and terrible slow   .. especially when your crotch and the sheet is full of wet smelly poop and watery shit (from no real food)  .. for 30 minutes plus.  TWIRL  AROUND, SWITCH FINGERS,  or REMOVE the WIRED FINGER THINGIE  on your left hand …. you get much quicker service  … if they think you are dying or no pulse.  CAN WORK ALSO with your air hose that keeps falling off your slit throat.  My Milton Bradley TUBBA RUBBA Game has more secure hose connections than hospital hoses  … you can twist and lock TUBBA RUBBA Hoses.  When your CHEAP hospital hose keeps falling off  .. when you twist and turn trying to sleep  .. help arrive sooner  .. when you get a poppy crotch  … and no one anywhere  .. despite repeated call button pushes.

WRAP THE CORDS OF YOUR CALL BUTTON and YOUR TV REMOTE  … around your side bed rail.  If you can not find your button or remote  …. you can not get out of bed to search for it  …. especially  .. when they won’t let you out of bed for three months (except for board transfers to gurneys to test appointments on other floors) and I had to relearn to stand and walk again.

BE FRIENDS WITH YOUR NURSES …They are very helpful, can get information, can explain why the HELL you just got two more syringes  .. when you don’t do that, or what are those capsules that you have never ever taken ever ever.  Also they KNOW or can find out. Doctors are a NO-SHOW   … if they ever appear  … usually at 6am  … or 6:15am ..after you have finally fallen asleep. Ask any doctor  questions QUICKLY  … while they are still putting on their gloves  … as they tend to disappear in under three minutes.    Also beware of male respiration therapists in red  ….. ASKING IF YOU WANT TO BE SUCKED.  I had never gone into a hospital in my long life  .. so was totally clueless of what they kept asking  … and I could not talk to reply  … after the first CLUELESS hospital that could not diagnose my MYASTHENIA GRAVIS kept me sedated  … and then slit my throat  … without telling me what they did or were planning to do.  WHAT DO YOU MEAN  ????  asking IF I WANT TO BE SUCKED ?????  No one had yet to tell me  … why my throat was slit and I was covered in hoses, Iv’s, and a green tank that would follow me to therapy  … after I had to go there to learn to rewalk  …. after three months locked to a bed.

 

 

 

[Jonathan A]

You are extremely LUCKY for a quick diagnosis. It took me 8 months and finally a floor nurse diagnosed me  …. and the next day they started me on 5 days of IVIG treatment.

My CIGNA doctors were TOTALLY CLUELESS and could not diagnose my MYASTHENIA GRAVIS  … so CIGNA figured  … oh the patient forms says he is old  …. he must have an old person’s disease   …. totally IGNORING my 8 or 9 M.G. symptoms.   So CIGNA referred me to a Foot doctor and an OPTOMETRIST to try to prove to themselves that I had old person’s DIABETES.   The OPTOMETRIST  said NO  … that I had a better chance of getting cataracts than diabetes  …. and this was after I already had all the symptoms showing of Ocular MYASTHENIA GRAVIS  … including droopy eyelids, competing eyeballs, not wanting to drive at night due to “CHRISTMAS STAR light rays” from every street light.  I even had to hold up my eyelids for his technician to look into my eyes on her viewing machine  …. like they have in DMV license offices.  At that point I would have given anything for my referral OPTOMETRIST  … to have referred me to a NEURO for blood tests.

I finally in desperation went to a hospital urgent care, three NEUROLOGISTS examined me, and were totally clueless in their guesses for almost a month.  They sent me in a late night ambulance to a second hospital of clueless doctors. After 4 weeks, a floor nurse recognized all my MG symptoms from her other patients and got me IVIG treatments.   I have been in remission since 3-24-2020 ..with only one M.G. CRISIS.   I had been taking over 2000mgs of CELLCEPT daily  … so my toasted immune system  … could not protect me from left arm acute septic bursitis swelling.    So I hope you continue to improve and you have doctors finally that know M.G.

 

[Jonathan A]

Be lucky that you are only on 1000 mg of CELLCEPT.    I am on 200o mg of CELLCEPT  as well as some MESTINON.    My MG seems in remission  … and all my symptoms are gone except fatigue and sore biceps  …. but I have SEVERE ONSET INSOMNIA.  It takes me hours to fall asleep. I thought that once I got off the PREDNISONE that caused my INSOMNIA as well as DIABETES too  ….  that I never ever had before,   ……  that my sleep troubles would be gone.

NO LUCK.  Some one told me that CELLCEPT causes INSOMNIA worse that PREDNISONE does.  I have been on CELLCEPT and MESTINON since 3-24-2020 diagnosis … and PREDNISONE from same day … until I had a severe Septic Bursitis MG crisis in my left arm in November 2020 and the two hospital stopped the PREDNISONE.   My immune system was toast from the immune suppressant drugs and my body could not same me from infection.

So I try to be careful and keep asking questions .. as doctors do not know anything about MG  … and give you STATINS, BETA BLOCKERS, and STEROIDS  … that your MG doctor and MG websites say is potentially dangerous if you have MG.   Also PREDNISONE and ATORVASTATIN gave me also DIABETES.  You take something to lower your blood sugar  … and unknown to you, another doctor’s meds have the side effect of raising your blood sugar  …. and creating greater risks to MG patients already suffering.

[Jonathan A]

I also read about adverse effects of medications.   I usually try to print out the article  … but I have so many papers now to go searching thru.   I started on Melatonin because somewhere I read that another drug I was taking may negate the release of my body’s Melatonin into my body in the evening before sleep.   So I was trying to take a Melatonin pill  to counteract that   … if it was true.    But as with most drugs  … they never say what is a safe versus an unsafe dosage.

I also ready somewhere also that Melatonin might affect the effectiveness of other medications  … but I don’t remember if they affect blood pressure pills, or diabetes pills  … or in what dosage taken.  So it might be worth trying Trazodone  … as some time Melatonin works and other times not.  THANKS