[Jonathan A]

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

I started having MG symptoms on 7-25-2019  … and no doctor could diagnose my disease.  I was finally diagnosed with MG on 3-24-2020 by a third floor nurse at the second hospital of 5 in 2020.  I tried and tried    …..    to get anyone to see me about my TOTAL HEARING LOSS  .. that happened after 2-4-2020, when I went to a BANNER hospital urgent care  … to get a diagnosis of what my health problem was (MG).   No one knew … of the  hospital doctors or nurses I asked on my white board scribbling questions.   Some said  it was because I was given ANTIBIOTICS  .. after URGENT CARE gave me a CODE RED (accute HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA given to an undiagnosed patient) on 2-5-2020 and sent me to their ICU where I got three PNEUMONIAS   … and three ANTIBIOTICS to cure them.

So some in hospital said  … because of ANTIBIOTICS, other said ANTIBIOTICS and the MORPHINE and FENTANYL sedatives I was also given,  another said that there are actually over 200 drugs that can given a patient temporary or permanent OTOTOCITY HEARING LOSS.  Because the CORONA PLAGUE from CHINA soon arrived in Arizona  … the following month, no doctor would see me in the hospital and no ENT doctor would allow any of the three hospitals 2-4-2020 to 6-11-2020 to have them send me to the doctor’s office by medical transport for an appointment.

Finally in late June 2020, the third hospital released me on 6-11-2020 and set up two appointment with hearing doctors.  Now that I was off ANTIBIOTICS, I could hear if anyone could talk LOUD six inches away. But I am better now  at 70% … except at church, where pastors were never taught to project  .. or correctly use a mike.   Both doctors tested me and confirmed that I still had hearing loss  … but because I was no longer TOTALLY DEAF,  and would not be seen when DEAF, they could only guess as to why.    My new NEUROLOGIST gave me some MYASTHENIA GRAVIS DANGEROUS DRUGS handouts  … and the ANTIBIOTIC TOBRAMYCIN and also BETA BLOCKERS and STATINS that I was given are all the MG dangerous lists.

I have had only the original 5 hours for 5 days of IVIG  .. when finally diagnosed 8 months later.  I am currently on 180 MGs of MESTINON and 2000 MGs daily of CELLCEPT.  Their dangerous drug STEROID PREDNISONE gave me MEDICALLY INDUCED DIABETES II  (which is now in REMISSION) after the PREDNISONE was killed.  So I still have hearing loss and ACUTE ONSET INSOMNIA  …. so are my problems of lousy HEARING and lousy SLEEPING  … due to the side effects of MG or MEDS?   WONDERING ALSO  ???

[Jonathan A]

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

So I had to try EAT all the left over candy that I got stuck with  … and that was bad and tasteless.

So now I only buy candy to hand out that I like to eat  …. M&M with peanuts candy.  No a single kid came this year 2022 and rang the bell.     My MG is in remission  … after an 8 month search for a diagnosis from a doctor that was not MG CLUELESS.    So lots of candy left  … but my GOOD doctors have not solved my nightly ACUTE ONSET INSOMNIA yet, since my diagnosis.  Is it due to the side effects of MG or the side effects of all my MEDS ????

They say M&M’s have CAFFEINE, so I can only eat them before 12 noon,  so it does not affect my sleep.  But I badly need them in am  … to wake up, and not be weak and groggy from no sleep, as it takes hours to fall asleep, and I am lucky to get three hours of sleep and then can not fall bad asleep.

[Jonathan A]

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

Not a single doctor who saw me or tested me could diagnose me.  I was finally diagnosed by a third floor nurse at the second of five hospitals.  She wrote in reply to seeing my trying to overcome my hospital bed problems and writing my symptoms on a paper pad……    100% speech and hearing loss from hospitals for 4 months  …    due to antibiotics OTOTOXICITY and they slit my throat and chest for a trach and a peg  .. when they could not diagnose why I had the issues … but their three neurologists at the first hospital did not know about MG ..     The nurse at the second hospital, wrote  “I KNOW EXACTLY WHAT YOU HAVE.  WE HAVE PATIENTS RIGHT HERE IN THIS HOSPITAL THAT HAVE YOUR SYMPTOMS.  YOU HAVE MG !!”

my three words are  ….

DOCTORS  MG  CLUELESS

because not a single doctor could figure it out,     now I am in REMISSION from medically induced DIABETES II,  due to overdoses of Statins and the NASTY STEROID PREDNISONE that was tapered and killed.

I am in REMISSION from ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS  since CHRISTMAS 2020 and from  MEDICALLY INDUCED DIABETES II and getting shot up with Lantus products since 10-25-2021.  So NOW, my three words are  ….

REMISSION   ME  AGAIN  …..        and a sidebar       TAKE  MEDS  RELIGIOUSLY

[Jonathan A]

Get your doctor to taper you off Prednisone as soon as you can.  For eight months, no a single doctor or hospital could diagnose my acute ocular and generalized MYASTHENIA GRAVIS. I was finally diagnosed by a third floor nurse at the second hospital.  She recognized my 8 or 9 symptoms and talked the doctors into a neuro consult and thymus/antibodies tests.  Thymus fine all three other test scores through the roof.

The first hospital had me on statins for no reason. The second hospital put me on the steroid PREDNISONE for MG  … so with both I got MEDICALLY INDUCED DIABETES II and my scores were 350, 400, and over.    After the third hospital, they tapered me off PREDNISONE and KILLED IT, so my new diabetes doctor got me tapered off of Lantus shots on October 25, 2021 and my numbers are 110 to 115  … so no shooting up any more and my PREDNISONE induced diabetes II is in remission.

My MYASTHENIA GRAVIS is in REMISSION since Christmas of 2020, after 5 months in 5 hospitals in 2020.  I have had only my 5 days of 5 hours of IVIG  … when I was finally diagnosed.  My Prednisone is dead now  … and I take 180 MGs daily of MESTINON and 2000 MGs of the immune suppressant CELLCEPT    .. so I am fine now  … and no more IVIGs.

Join MG support groups and ZOOM with them. I belong to 4 groups.  They can tell you what works and does not work for them  … along what doctors locally are MG clueless to avoid, and which doctors know about MG and what symptoms we have  … to correctly diagnose us and treat us. Then stick to the MG savy like glue.  He will keep you alive and walking.  KNOWLEDGE is POWER to stay safe and in REMISSION.

If you have an MG clueless doctor  .. ditch them and quickly find a QUALIFIED doctor who knows MG   …. Your MG support group moderator will have names of doctors, who have been properly educated and can help you.  I had three neurologists at the first of 5 hospitals of 2020.  They made everything worse  … as I got an overdose of anesthesia, because I was moving to much in X-Rays and phlegming and trying to stay on my side  …. so I was sedated for MRI and CATSCANS.  It is dangerous to suppress the breathing of undiagnosed MG patients with sedatives such as Propofol and Rocuronium  … when MG already suppresses our diaphragm breathing.  So wear a MG medic alert bracelet, and warn people of your acute needs.

[Jonathan A]

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

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

It took me 8 months to be tested and diagnosed with ACUTE OCULAR MG and GENERALIZED MYASTHENIA GRAVIS.  NOT A SINGLE DOCTOR, including THREE “neurologists ????” at the first hospital could diagnose me and give me Thymus and Antibodies tests.  In the 60 plus MG personal stories that I have read so far,    many MG patients start showing symptoms in high school, and are not diagnosed till they are mothers.   I was diagnosed by a third floor nurse at the second hospital.  My ANTIBODIES scores were through the roof  …Binding 8.7  8.1 and later 3.5 (after 5 days of IVIG)    Blocking was 50% and 59%.   Modulating was 81%.

From my 4 support groups, MG books/bios that I bought and read, and websites  … there are tons of people still waiting in the wings trying to get appointments, tests, and a diagnosis.  Also there have been members on my ZOOMS that were accused of being sero-negative ..or their doctors, charging medical plans and no longer treating some MG patients   … or agreeing to doing MG tests.

So we are highly UNDER COUNTED  … as the doctors and even the Neurologists that have seen me,  were clueless/inproperly educated  … and do not know  what MG means in ENGLISH.    My saving  Neurologist …  that the diagnosing nurse got me connected to,  tested,  and through my five days of IVIG’s  … Dr. Meredith Wicklund,  RECOGNIZED MYASTHENIA GRAVIS  … and her specialty was Dementia  … but Dr. Wicklund knew her stuff  … and got me safely through tests, diagnosis, meds, and 5 days of IVIGs.  THREE CHEERS TO PROPERLY EDUCATED DOCTORS.

My new Myasthenia Gravis DOCTOR is an old school NEUROLOGIST from the U of M in ANN ARBOR. He has been around the block and the hospital wards.  He knew all the symptoms as I tried to tell my “situation” to my new neurologist.  He did not look at me, as if I had THREE HEADS, or write me up as “A DIFFICULT HISTORIAN” and “TANGENTIAL”.  He understands that my 8 or 9 very obvious symptoms are ONE DISEASE   … MG.  I wish EVERY doctor had had a medical course in complete SYMPTOM DIAGNOSING.  I had a CODE RED called on me  …. ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA.  ALL STRIPES RARE DISEASE FOUNDATION has found so far 792 medical documents for me  … it was an overdose of sedatives  … PROPOFOL and ROCURONIUM   to an undiagnosed MG patient.

[Jonathan A]

I have been in REMISSION from my ACUTE OCULAR MG and ACUTE GENERALIZED MYASTHENIA GRAVIS since 11-27-2020 … after I left my fifth hospital of 2020.    No a single doctor was able to diagnose MG  .. despite having every single symptom.   I was finally diagnosed by a third floor nurse,  who had been in the wards long enough to recognize my MG symptoms.  It took me 8 months to be diagnosed. Every doctor was cluelessly educated, I was finally diagnosed and  have been in remission from ACUTE OCULAR MG and ACUTE GENERALIZED MG.

I had my original five hours of five days of IVIG at the start  … and have been on CELLCEPT 2000 MGs daily and MESTINON 180 MGS daily ever since.

I was on that NASTY STEROID PREDNISONE at the start  … but it gave me HORRID ONSET INSOMNIA, a huge weight gain (lost 43 lbs in 6 months being undiagnosed beforehand), and the PREDNISONE along with the STATINS drugs   ….  they were giving me   ….  gave me MEDICALLY INDUCED DIABETES II.

But I am in DIABETES remission, as tapered off PREDNISONE  by 11-27-2020,  and off shooting up with LANTUS shots since they were tapered off on 10-25-2021.

So my current disease duo is MG and ACUTE ONSET INSOMNIA  … and I am still trying to find a REAL doctor, who will analyze my three in lab sleep studies and fix my insomnia.  My doctor referred me to a sleep study facility  ….. not to a DOCTOR  ….. so my ALL STRIPES RARE DISEASE RESEARCH GROUP has found over 792 missing medical documents  … and my three LAB STUDIES to translate still.  They also located my missing three types of ANTIBODIES tests  …binding, bonding, and modulating  … all were over the ROOF… so I am SUPER POSITIVE MG.

[Jonathan A]

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

I have been in remission for 15 months now.  I have always taken 180 MGS (3 of 60) daily of Mestinon/Pyridostigmine Bromide and 2oo0 MGs (two 500 in am and two 500 in pm) daily of Cellcept/Mycopenolate Mofetil.   I have had only my original diagnosis dosage of 5 hours for 5 days of IVIG treatment once.  I have had no side effects, besides afternoon fatigue, and acute onset insomnia, since they killed my PREDNISONE.   So I guess this CELLCEPT is keeping me alive.  Talk to your doctors, and join and ZOOM with MG SUPPORT GROUPS.  They will tell you who the GREAT MG DOCTORS are,  and what info on your ZOOMs … you find works for the other ZOOM MG members, that you are meeting in your online ZOOMs.  I do not know why I am in remission, but these drugs work for me … and I had three MODERNA Shots for the “PLAGUE from CHINA”  .. and no ill effects.  BE INFORMED TO STAY ALIVE.

[Jonathan A]

I am wishing you well on your travels  …  and will be praying for you.  I have been in remission for a year now and take 2000 MGs daily of CELLCEPT, 180 MGs daily of MESTINON, and was tapered and weaned off that nasty STERIOD PREDNISONE … which had HORRID SIDE EFFECTS.  So if you are not on CELLCEPT,  ask your doctor  … I have had no relapses  .. and only had my original 5 hours of 5 days of IVIG.

I personally would not risk it,  as I was undiagnosed by every Doctor, neurologist, and eye doctor who saw me for 8 months  ..till a third floor  hospital nurse recognized my MG symptoms and talked her supervisors into getting me tested.    PLEASE FIND and ZOOM with MG support groups, in any area that you plan to visit.  Their moderator and your fellow members in that support group  … will know the GOOD doctors  … as well as the UGLY (MG clueless doctors), where you plan to visit.  GET NAMES and DOCTOR CONTACT NUMBERS NOW !!!!  If I could not find a single MG educated doctor for eight months in ARIZONA to diagnose all 9 of my very OBVIOUS MG symptoms  … what will be your chances out of the US?  The BRITISH MG group that I also ZOOM with (1 of my 4 groups) is EXCELLENT.  http://www.myaware.org

Bring your MEDIC ALERT BRACELET, a flash drive with your records,  and many copies of your medical records  … as well as MG website downloads   …  from http://WWW.MYASTHENIA.ORG and http://WWW.MYAWARE.ORG.  They have downloadable info pages of DANGEROUS DRUGS, ANESTHESIAS, and ANTIBIOTICS, as well as info pages to give to 911 crews, emergency rooms, hospitals, and an anesthesia provider.

I already had a CODE RED called on me, from an overdose of ANESTHESIA, to an undiagnosed MG patient, when I stopped breathing, and they had to make several attempts to resuscitate me, and had several failures to extubate me.  They did not like my moving, phlegming,  and choking  .. when they attempted to do X rays, MRIs and CAT SCANS.

BE EDUCATED AND STAY SAFE.  I wish you well.

[Jonathan A]

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

I am currently on MESTINON 60 MGs three times a day and CELLCEPT at 1000 MGs twice a day.  My best advise is to join 2 or 3 of the MYASTHENIA GRAVIS support groups and ZOOM with them in CALIFORNIA or any other states.  I Zoom with four different groups.   THEY are a GODSENT.   They can tell you what is working and not working for them  … in pills, solarius, Vyvgart, or IVIG.  Your fellow MG attendees know    …..  who locally are the GOOD as well as the UGLY and clueless (insufficiently MG educated) doctors are in your location.  They and the SUPPORT GROUP MONITOR are a terrific asset to use.

Depending on you are,  the UNIVERSITY of CALIF at IRVINE is doing MG trials.  They contacted me by email, as well as called me by phone. They will help you with MG intelligent doctor choices.  I answered all her  questions .. but did not have a high enough number  score on those MG illness checksheets, to still be sick enough to qualify  .. as I was in remission.

I have been stable for 15 months.   Use a support group and find a GOOD MG doctor.  Do not ASSUME that MESTINON is what is hurting you.  My Mestinon and Cellcept  are keeping me fine  … and MESTINON is not TOXIC to me   ….. PREDNISONE IS VERY TOXIC with lots of side effects and maybe your medication  issue.  Use the support groups to find a GREAT MG DOCTOR nearby.

PREDNISONE causes a great weight gain, moon face, insomnia, and gave me (with the statin drugs) MEDICALLY INDUCED DIABETES II.  So my blood sugar numbers (never had diabetes ever) jumped up to 350, 400 and “HIGH”.   Most medications are probably dosed by a patient’s weight,   so that could affect you too  .. if you are getting too much for your slim frame.   In the first 6 months that I was undiagnosed  .. I lost 43 pounds  … and continued to lose even more weight  …  but I am back to my original weight  .. due to massive doses of weight-gaining prednisone, until it was STOPPED.

Find a good doctor to slowly taper you off nasty PREDNISONE.  My new MG savy doctor got me tapered off by December 2020 and on 10-25-2021, my other new DIABETES doctor got me tapered off of SHOOTING UP myself once or twice a day with LANTUS and INSULIN SHOTS in my abs, after 5 months in five hospitals, getting shot up at least once or twice every day in the hospitals and then by me (when I finally got out).

So use the support groups (google the MG Foundation website believe it is http://www.myasthenia.org  … or its counterpart  http://www.myaware.org  for their locations)  Both websites have plenty of downloadable  fact sheets of dangerous drugs, info pages, and doctor/emergency room handout papers, to give to emergency crews and emergency or 911 help.  I all but DIED  … ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE.   THE PACU nurse called a CODE RED on me and got me breathing again  … after I was put down with two sedatives  …   for moving too much for MRI and CAT SCAN tests  Be informed and stay safe  … with help from support groups  … they will help you and your doctors get a safe combination of meds.    LIVE LONG AND PROSPER  !!

[Jonathan A]

So far, after 8 months of searching for a diagnosis for my disease….and now having a name for it  … ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS,  I can now google and ZOOM with support groups to get educated.  My support groups have really helped me out, answered my questions, and directed me to websites and trial clinics  with information, to download, printout and give to my doctors, who don’t know what MG means in ENGLISH.

I have been in remission for 15 months now and am stable  … and an now in remission also from medically induced DIABETES II  … from all the STATINS, STEROIDS, and PREDNISONE that the hospitals were dumping in me.  So I am off LANTUS and am not forced to SHOOT UP any more.

The researchers for the UNIVERSITY of CALIFORNIA at Irvine, called me up and had me answer many MG questions, after submitting my medical papers and tests online.   Julia, the research contact, did not feel I had high enough BAD SCORES on that standard MG check sheet to qualify., after I answered all her questions, when she called.

I do so much want to help find a cure, and help others out, but at the same time, I do not want to risk falling out of REMISSION,  as I remember how sick I was undiagnosed  … and that I actually died (ACUTE RESPIRATORY FAILURE due to ANESTHESIA)  … CODE RED   ….   when stopped breathing for MRI/CAT SCAN tests  …. too much ROCURONIUM and PROPOFOL to an undiagnosed MG patient.

Why am I in remission, while my fellow ZOOMING MG support group members (belong to 4 groups) still are doing monthly IVIGs or trying desperately to taper off PREDNISONE?  Wouldn’t clinics, who know about MG, and are trying to figure it all out, want to figure out  .. how I can be stable  .. when others are not ??   I am on 2000 MGs of CELLCEPT daily and 180

MGs of MESTINON daily … with no more IVIG  .. beyond the original 5 hours for 5 days, after the nurse talked her supervisors into testing my ANTIBODIES  … all three tests were “thru the roof” high scores.  I took me over a year to get those test results with the great help of ALLSTRIPES and PICNIC HEALTH RARE DISEASE GROUPS.  They also finally found a THYMOMA X-RAY  … and I was clear with no masses.

Because I am on immune suppressants for transplant patients (have no transplant)  … my immune system is TOAST  …. and all doctors seem to be into BLOOD THINNERS also, so I am on 5, and bleed in arm or leg, whenever I am out now gardening and pruning.  It is wonderful to know that I can get on my knees again  … and not be undiagnosed weak with MG, that I have to crawl back into the house and lay down on the carpet to rest, and gain my legs again.

So I want to help out  …  but how can one sign up for a THYMUS removal  .. and then not have it removed ???  I understand pill placebos  … but an operation placebo  … with a very high risk of infection and bleeding excessively. NO WAY !!

My non neurological doctors, still do not understand my MG  … so when they see my low red and white blood cell numbers, I need to remind them I am on 2000 MGS daily of CELLCEPT.  I also had to remind them that when you keep dumping STATINS and PREDNISONE in me  … that my blood sugar numbers HIT THE ROOF.  So one wants to help out doctors figure out and cure MG,   but we that actually have MG  … are still trying to educate the many doctors that we see  .. who still don’t even know what MG means in ENGLISH.

My unknowing doctors keep wanting to scope me out from top to bottom, and maybe “take Samples”  … and I keep having to remind them that I have MG, my immune system is toast, I am on 5 blood thinners/anticlots, and lost my hearing for 4 months, because TOBRAMYCIN is dangerous to undiagnosed MG patients.  Then there is the whole matter of MG ignorance, and other not understanding that improper use and quantity of SEDATIVES and ANESTHESIAS, can give me a second CODE RED OVERDOSE so I stop breathing again.  So I am all for participating in trials and learning  … but they need to be SAFE  … as well as “IN TOWN” … as travel out of one’s local city comfort zone  … is a NO GO.

[Jonathan A]

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

In July 20219, I started showing all the symptoms of MG, starting with OCULAR MYASTHENIA GRAVIS, and then all my other body parts.  I had just turned 68 the previous June.  It took me eight months to be diagnosed with MG, as every doctor who saw me failed.  I was finally diagnosed by a very intelligent and understanding third floor nurse at the second hospital.

I have been in REMISSION for about 15 months now,  with my remaining problems, being still some leg and calf weakness, along with being really tired in afternoon hours, as well as having ACUTE ONSET INSOMNIA.  So far,  it takes forever to fall asleep, and when you wake up early, it takes hours to get back asleep, if at all.  Doctors still don’t really understand … if it is from the side effects of having MG or the side effects of 2000 MGs daily of CELLCEPT, and 10 other drugs daily.  I have been finally tapered off of PREDNISONE  … my nasty effects from that drug should be out of my body now.

I have read that MGF of California is funding a study at University of Calif at Irvine on that very topic.  So I am now too old, and no longer have a lady to do it with,   and have not considered sex, in some time.   But with my very bad INSOMNIA, and taking forever to get sleepy and not wake up dead tired and weak, from lack of sleep. I was willing to try ANYTHING to get a good night’s sleep again.  So I don’t know … how many other male MG patients have INSOMNIA sleep problems, especially after five months in five hospitals in 2020 with no privacy,  lights always on, and hallway doors open.  But I was willing to try ANYTHING to sleep,  now that I was at home in my own bed … and I remember reading and experiencing, that sex makes men sleepy,  when you are tossing and turning in bed, from sore shoulder and calf muscles, trying to fall asleep.  So sometimes, when I am totally frustrated  .. but still awake,  I try a hand job.  With a good imagination, and no “wrong colored”  lights keeping you awake, sometimes it works, sometimes not, but sometimes it just makes you fall asleep a little sooner.  I never thought that this topic would appear on this website  … but if it helps one person get asleep sooner and longer, then it is worth it, until someone finds the clue to the MG/Insomnia mystery.

When you only get 3 or 4 hours a sleep at night, it affects even more what you can accomplish the next day, without constant laying down and resting, or being a half awake zombie, from poor sleep the night before.

[Jonathan A]

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

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

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

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

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

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

[Jonathan A]

I have been in remission for about 15 months so far   … from my ACUTE OCULAR  MG and GENERALIZED MYASTHENIA GRAVIS,    I am taking 2000 mgs of CELLCEPT and 180 MGS of MESTINON daily, so I am still feeling fine.  PREDNISONE is a NASTY STEROID    ….   that causes me,  like many other MG patients  …  INSOMNIA,   a large weight gain,  and medically induced    DIABETES II, when combined with being forced to take a STATIN drug.

Fortunately my fifth hospital of 2020, was able to taper me off PREDNISONE, when I left on 11-27-2020.  So my new doctor was finally able to taper me also the nasty LANTUS syringes, by Halloween 2021,  as my losing PREDNISONE dumped my sugar scores, so I am now in Diabetes remission also.

In these comments, you discuss finding a MG NEUROLOGIST, who actually knows what MG means in ENGLISH.   I found one finally, after searching for 8 months, and spending 5 months in 5 hospitals in 2020.   MY KNOWLEDGEABLE MG NEUROLOGIST is EXCELLENT   … and worth his WEIGHT in GOLD.  So if you find a great doctor   …NEVER let him go !!!

It took forever for me to get even some of my medical records  … and ALLSTRIPES RARE DISEASE RESEARCH GROUP has been really wonderful in strong arming doctors and hospitals for my tests, consults, and documents  … so they can do their research with solid MG patient data … and I now know the names, dates, and times,  of the two NEUOLOGISTS and the NEURO-SURGEON, at my first hospital  … where I ended up with a CODE RED resuscitation  …. because of “ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE”.   SO I avoided those “doctors” and went to my MG SUPPORT GROUPS for advice for GOOD DOCTORS, who were paying attention in med school and rotations.

The consulting  reports of those three  “neurologists ??” suggested all my MG symptoms were either  ….  stroke,  seizures,  drugs, drunk,  heart attack,  toxic  metal poisoning,  or some infectious disease.  So the three neurologists tested me for HERPES and magnesium,  not ANTIBODIES.   So when my first X-Rays came out NEGATIVE… but slightly blurry,  they sedated me with PROPOFOL and ROCURONIUM, according to my newly received hospital papers, so I would stop moving for MRIs and CAT SCANS.   SO I did stop moving and breathing  … until the nurse called a CODE RED.

My advice,  once I found a NAME FOR MY DISEASE  …  MG   … and started GOOGLING LIKE CRAZY … is find an MYASTHENIA GRAVIS SUPPORT GROUP, join their ZOOM meetings … and learn from other MG patients.

You will find out who are the GOOD DOCTORS,   …. lazy doctors with poor bedside manner and training,  and the GOLDEN MG DOCTORS.   Ask and they will tell you what medications and infusions they are on, the good and the bad side effects,  how to jump through hoops,  for insurance paperwork,  and what doctors will LISTEN  …   when you attempt to get a referral for THYMUS and ANTIBODY TESTING  … so you can PROVE that you have MG  …. and not a fatal brain stroke.

Your support group moderator will often invite a professional to a ZOOM meeting.  Last month the Phoenix group had a SOLARIS contact person, and my ATLANTA support group had a VYVGART representative to answer your questions.  Also several of my fellow MG patients, were still on monthly IVIG treatments, and could tell me about those too. (I have only had the original 5 days of 5 hours at the second of five hospitals.) Last Saturday   4-9-2022, I  ZOOMed with a second ARIZONA support group.  On 4-23-2022, ATLANTA is doing a live, in person meeting  … but also ZOOMing for those of us attending online from out-of-state.  I believe it is 10 am to 1 pm.

I am glad to see that Andy Coyne … from across the pond  … has been responding to this “thread”.  I use their MYASTHENIA GRAVIS FOUNDATION website  http://WWW.MYAWARE.ORG    all the time for their articles and papers, that I can download and print out, …    especially their ones on DANGEROUS DRUGS for MG PATIENTS,   what to tell the arriving EMERGENCY HELP 911 MEDICS, what paper to give to EMERGENCY ROOM doctors,  and what MG paper to give to an ANESTHESIA GIVER  … so you too don’t get your BREATHING SUPPRESSED  … when your undiagnosed MG is already suppressing your breathing  … and end up needing to be resuscitated like I was.

I just signed up for the LONDON MG ZOOM drop in session for Tuesday 4-26-2022 at 6:30pm  … that is 10:30 am my time.  They also are having a 1 pm session on another day  …  but I still have MG onset INSOMINA issues  … was still awake at 4 am for the last two ZOOMs from there.   One of my London ZOOM support meetings  .. had 75 attendees online.   Three pages of 25 people  … five columns of faces … and five rows down.   All like me … all with MG.  I did not feel so alone  … although some accents were THICK,  like my grandmother’s side from WALES.

My GOOGLING   …  says there are 60,00o diagnosed MG sufferers in US,  and about 12,000 across the pond, in the UK.  But they seem to have more government support, lanyards, special door keys, and other services.  What they say is TRUE   …. we are two countries separated by a COMMON language.  After several ZOOMs with   www.MYAWARE.org,  I am getting better with the accents,  but we are probably just as SCREWY to comprehend,   … if hippies, or from Boston or Texas.

So get on an MG  support group mailing list and they will email you the date of their ZOOMs and the LINKS to click into a meeting.   SUPPORT GROUPS have given me a great help  … in helping me through this past year, and keeping me in remission.   Also,  it gives me hope, as many of my fellow MG patients, are still doing monthly IVIG  … or still trying to taper off PREDNISONE  (There but for the grace of God … go myself still).

So find these groups and sign up  …. they keep a list of GOOD DOCTORS !!!  Your fellow MG friends will help you FIND A GOLDEN NEUROLOGIST too.

 

[Jonathan A]

You were very lucky to be diagnosed in only 6 months.  NO doctor could diagnose my acute OCULAR and Generalized MG in 8 months of searching for an explanation.  I was finally diagnosed by a third floor nurse at my second hospital.  The three neurologists at the first hospital did not know about MG either, as well as my own eye doctor ….   despite severe droopy eyelid PTOSIS and competing eyeballs.  Many MG patients have told me that an knowledgeable eye doctor can refer you to a Neuro-eye doctor, to get his suspicions tested  … for thymus and antibody bad scores.

You are very luck to still be working.  I had a late afternoon-evening shift, probably like you are on,  but the later hours in the day were always when my undiagnosed illness started getting my leg muscle, and finger strength dying.  No one could diagnose it  .. and it scared me, of when it would be bad, on a work night.  SO I was forced to retire  .. until I could be ME AGAIN.    So it is a great idea to get some resting in to prepare you for the rest of the day.  It has really helped me … along with 180 MGS of MESTINON and 2000 MGS of CELLCEPT daily.

You need to rest and get in remission  … before the “terrible two’s start”.  Take plenty of pictures and stop to enjoy the new kid at home.

GOOD LUCK.

[Jonathan A]

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

FIND AND JOIN a MYASTHENIA GRAVIS SUPPORT group in your area.   They all have  ZOOM meetings on a monthly basis.   You can ask any questions and fellow MG patients can tell you their experiences with various invasive MG drugs.   Also the MG SUPPORT Group   moderator often invites Solaris and Vyvant representatives who talk about what these medication treatments are.  Also in my recent Phoenix ZOOM meetings, speakers from both of these companies discussed what it is.

Also ask in the ZOOM meetings, if any other MG patients have tried IVIG, SOLARIS, or VYVART Treatments.   From what people are saying … all three of these are     …  being on IV needle infusions on a weekly or monthly basis for a least an hour for each infusion.   They are VERY PRICEY unless you have very good health insurance coverage.

I had  five days (five hours per day)  of IVIG intravenious infusions at the second hospital  … 8 months after I first had my MG symptoms appear and was finally correctly diagnosed by a hospital nurse 8 months later.

These three MG TREATMENTS are IV infusions.   They are not daily MEDICATION PILLS.  I take daily 2000 mgs of CELLCEPT and 180 mgs of MESTINON daily to be in remission now.  I was on PREDISONE for 10 months and my MG NEUROLOGIST finally got me tapered off of it.   Has very nasty side effects.   Weight gain (40 lbs plus), terrible insomnia,  and medically induced Diabetes II

So join your local MG SUPPORT GROUP on ZOOM, ask questions to see if anyone has done IVIG, SOLARIS or VYVART.   They will know what that style of treatment it is,  good and bad the side effects are,  how to negotiate best   … jumping through the hoops of the insurance paperwork, and what websites you can GOOGLE, to tell you what each treatment involves.       LISTEN TO your fellow MG survivors   ….  and BE EDUCATED.

[Jonathan A]

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

I have been told that people with MG have a harder time in HOT climates, and can really suffer in the summers  … more than more northern MG patients.  I forget which of the 11 meds that I am taking, that have pharmacy papers that warn me, to not be in sunlight for too long,  and cover up, as at least one of my  MG meds, can cause skin cancer.

I am on 2000 MGs of CELLCEPT daily and 180 MGS of MESTINON daily.  My doctors have finally gotten me tapered off that NASTY STEROID PREDNISONE.  It gave me INSOMNIA, heavy WEIGHT GAIN, and combined with STATINS gave me medically induced DIABETES II.   Once I was tapered off that, the doctor was able to taper me off LANTUS and LISPRO  by October 25, 2021  … so no more insulin shots, and I am under 6.2.  Once they started feeding me the steroids and statins, I was 350, 400, and “high”  … on the nurses light meters ?? and getting shot at least twice a day.

Now that I am in MG remission, I feel SAFE.  I can go back outside, grip a lawn mover handle, a edge trimmer grip, or a rose clippers.  I can kneel down and plant flowers and trim bushes  … without worrying if I can get back standing on my own.  When I was undiagnosed, I struggled to trim roses, using BOTH HANDS, as my fingers were  WEAK.  More than once, I had to crawl to a chair, try to get in it, and rest, so that my leg calves, could get me into a walking position.  So I am back to being me again, and worrying less  … but go slow and take breaks and rest.

PS to Amy  … I also collect and reupholster much older chairs and other furniture pieces.  Before I got sick and undiagnosed from MG,  I worked for local and college theatres, getting props and furniture for their period shows.  Some times if you were living in an old city, such as Tulsa or Greenville, you could pickup a good piece at the estate auctions, or the weekly auction houses, especially dining room chairs and tables cheap, as most every bidder, already owns a dining room set. I have already bought several large dining room tables and made them smaller  …..   so they become nice writing desks, or a pair of  two legged, side wall tables,  for stage sets.  If the furniture looks too perfect, the local antique sellers will always outbid you, but if it has any flaws, needs recovering, or is an “out of Fashion” piece, you can get it CHEAP….

[Jonathan A]

THANKS AMY  for working for a rare disease foundation.  By googling for support groups, I found two and they are continuing to be great … trying to pry my own medical records, tests, consults, and  results out so I can see what they did to me  … and how they were screwing around and were never able to diagnose my MYASTHENIA GRAVIS and OCULAR MG ever for 8 months.  Every doctor failed, but a third floor nurse at  the local DIGNITY HOSPITAL, saw my symptoms, LISTENED, and got me tested, diagnosed formally, IVIGed and medicated.

Both PICNIC HEALTH RARE DISEASES and ALLSTRIPES RARE DISEASES are continuing to find my medical records and tests,  even letting me know that I was drugged with MORPHINE and FENTANYL,  at the first BANNER Hospital, that I still don’t know the whole story of.  They sent me to a DIGNITY Hospital as a LTAC, instead of diagnosing my MG.    So learn about RARE DISEASE RESEARCH groups.  If you share your story with them to further research, maybe you too can receive information to help you as well.  THREE THUMBS UP FOR RESEARCH  !!  Thanks Amy

[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]

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

See also University of California at IRVINE.  They are an MG research clinic trial testing medical center.  They would know people who KNOW…..   I clicked a link for MG patients on a MG website, sent in my medical history, and they called me back to answer questions about my condition and what my MG score on illness would be.

[Jonathan A]

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

But I am Italian, and the eldest of seven kids, and my fraternal grandfather was fresh off the boat from Naples at 16. So that may make a difference.

As I said earlier  …  my MG or my pill side effects, give me bad onset insomnia all the time  … and sometime a little solo action, makes me more sleepy quicker. It is worth a try.  They say that you can’t get asleep, if you read with lights on, see TV , or do computer work before lying down.  So what else can you do in the dark, when you can’t fall asleep in bed?  When I struggle to get asleep and it takes several hours, all I seem to keep seeing and remembering  …  is all my five plus months of HORRID experiences in five hospitals in 2020, suffering and being UNDIAGNOSED.  So using my imagination in bed at home in the dark, helps me not relive my hospital nightmares, and maybe I can fall asleep sooner, and not be depressed, while trying to fall asleep.

Maybe what they say is true  … IT’s MIND over MATTER.   Just as I always feel better attending MG support groups ZOOMs.  There are people just like me  …  dealing with MG … and in worse shape than me  …  possibly.  It lifts a burden from your MG life,  knowing that you are not alone.

[Jonathan A]

Reply to Amy.   I have two very good DANGEROUS TO MG PATIENT MEDICATION LISTS. I always take them with me to ALL doctor appointments.  Also I carefully GOOGLE all of my medications,  so I know their SIDE EFFECTS.     I keep a copy of everything in my messenger bag, in case,  I am sedated or lose my speech/hearing again due to their mistakes.  I need my PAPERS and my MG MEDIC ALERT BRACELET  .. to SPEAK FOR ME!! , when I can not.  I have been in remission for a year now  … and want to stay that way.

Most doctors that see me, do not know what MG is … or why I am on certain drugs.   They send me to Sonora Labs for blood tests, then don’t understand the results  …. when I show low red and white blood cells numbers.   I have had to remind two of my doctors that I am on CELLCEPT  2000 mgs daily  … irregular heartbeat and low blood counts are the side effects of what I need to suppress my immune system  …. just as Prednisone sent my sugar levels to the roof, when I never had any Diabetes.

In reply to your thread,  ANTIBIOTICS can be VERY DANGEROUS,  especially TOBRAMYCIN.   I had total hearing loss for FOUR Months, in my first three hospitals of 2020, and my hearing is only about back up to 70%.  (so hearing church services on delayed  computer broadcasting gets better sound quality and comprehension)

My doctor said that my learning loss was due to sedation and antibiotics.   Other nurses said it was due to antibiotics  .. was taking those three meds for that … after I contracted three types of Pneumonia in the ICU of the first hospital (I was still not diagnosed with MG yet).

Another nurse at the next hospital said  .. that there are really over 200 medications that can cause temporary or permanent HEARING LOSS.  I googled my notebook,  and she was RIGHT about that 200 number.  So I was given pens and notepads at the second hospital and whiteboards with colored markers at the third hospital, and spent four months communicating that way in the hospitals.   About a week before I got out of the third hospital, I could hear a nurse, sometimes if she was six inches from my near side  bed rail, talking loudly,  …  once the three antibiotics were tapered and out of my body.

Also beware … if you are forced to take any “blood thinner” pills.  If they want to do anything to your body……   or get “samples”, your neurologist will insist that you stop your “blood thinners” pills, for at least five days  … before anyone goes “exploring”.  Not all doctors pickup on what MG medications are for, and what they do to your weakened body  … as they can make your breathing WORSE, and make your body get INFECTED … when you are taking immunosuppressants, that makes my immune system TOAST  … and unable to protect me.  So you can easily have internal bleeding or get an infection.  I still have to wear long sleeves shirts or long pants, when out gardening, as I can scrap my self on roses or pruning branches and start bleeding.

[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.