[Jonathan A]

I continue to have INSOMNIA issues, since my first MG symptoms appeared on July 25, 2019. I was not diagnosed with MG till eight months later on March 24, 2020. I spent five months in five hospitals in 2020. Then for 2021, I had to switch to a new PCP. After a lot of begging for a referral, I finally got a phone call from INFINITY SLEEP SOLUTIONS in Tempe AZ. They scheduled me for one test in May and later they wanted me to return for a second overnight test in June.

My PCP thought that he had ordered an “in Home Test” … but both were in a test lab overnite. Neither my PCP nor INFINITY would ever give me those two test reports or even discuss the sleep study results. So I finally replaced that PCP and got a more responsible ADULT PCP, and she has much better doctor/patient skills .. so she got me a referral to a BANNER SLEEP SOLUTIONS doctor, who I specifically ask for … as the new referral is a NEUROLOGIST and also the SLEEP STUDY doctor. That way … if she is another poorly educated “neurologist ?” … then at least she knows who to ask around … to find out what MYASTHENIA GRAVIS is (unlike the three “neurologists??” at my first hospital). Also I was told about ALL STRIPES and PICNIC HEALTH RARE DISEASE FOUNDATIONS … and they have recovered for me over 1600 medical documents, including my two 2021 SLEEP LAB REPORTS, my old PCP’s referral request, and a separate report from the first hospital that talked of N1 and N2 and spindles ??

So now I am ready to have the new referral explain my original SLEEP STUDIES and schedule new ones if needed, once my slow healing left leg wound recovers and my right side “shingles” continues to improve … so I can at least try to sleep on my side again.

The two reports said that in May I had only 11 minutes of REM sleep (8pm till told to leave at 5am) and in June .. the report says I had 0 minutes of REM sleep ( I was told not to appear before 9pm, they were late starting as I was told to switch rooms … so probably 10pm start) … but they pushed me out at 3 am so NO REM SLEEP at all.

So I am looking for answers to INSOMNIA. I am very lucky if get four hours of sleep. I always sleep on my side and play by all the “how to get some sleep rules”. The five hospitals had me all wired and hosed up and my throat TRACHED with a hose coming out my neck … so it was about impossible to sleep at all especially with open window curtains and open room doors with shiny hallway lights out there. The hospital papers also listed that they gave me morphine, fentanyl, and MELATONIN to sleep and not try to turn on my side to sleep/have hoses & IV’s come loose.

MELATONIN is very dangerous to MG patients, as the Mayo websites say that the MED is very bad for MG patients like us, who are on IMMUNOSUPPRESSIVE THERAPY, as it “undoes” all that our meds are doing to keep us stable.

My parents were born in Marquette Michigan and then moved from Minneapolis to Tempe Az. Dad’s mother Anna Splies was from WISCONSIN RAPIDS, like her sister ESTHER … who was a milliner in downtown Milwaukee. They say that MG is not contagious or hereditary, BUT there seems to be that MG has a BAD GENE, so that several family members can have similar neuro or muscular diseases. Anna died at a young age of LUPUS. Dad died of MYASTHENIA GRAVIS at home (acute respiratory failure), I have MG (and died at the hospital of ACUTE HYPERCAPNIC RESPIRATORY failure but was resuscitated at 8:37pm on 2-5-2020), and my brother Greg, daughter, and grandkid all have EDS – Ehlers Danlos Syndrome. So all it takes is one bad gene to cascade to other relatives possibly. So hopefully … you too will have success with your new neurologist. It is so hard to know what meds help you, what meds hurt you, and what meds affect adversely the other 5000 MGs of meds, that you must take daily to stay stable and get some much needed SLEEP.

[Jonathan A]

I have ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS. I have been in REMISSION … gradually, since I left my fifth hospital of 2020 … on BLACK FRIDAY of 2020 … November 27, 2020. It was PURE HELL … since my first vision and very weak fingers/calves of MG first appeared on July 25, 2020 … when my fingers just did not have the strength behind them to switch the irrigation drop gates to start my yard irrigation that morning. I have recovered and in REMISSION from MG, … but NOT the lingering side effects of MG and the 5000 MGs of meds I take daily to suppress my symptoms and side effects.

My ongoing and continuing three BAD PROBLEMS are … ACUTE ONSET INSOMNIA, HEARING PROBLEMS at the lower voice ranges, and a TOASTED IMMUNE SYSTEM ( I try to get my gardening and pruning done … but get injured by flying insect bites and thorny rose, palm tree, and bougainvillea thorn punctures .. that take months and many tries at antibiotic meds to slowly heal). The MYASTHENIA GRAVIS NEWS FORUMS, such as the one that we are on now … is a great opportunity to learn from each other and share what we … and others like us discover. I complained earlier about INSOMNIA and other issues … and others have emailed me, medical papers of overseas trials and medical journal articles … that I keep copies of … in my computer medical files.

My INSOMNIA problem is basically …it takes hours to fall asleep, you then wake up a few hours later … say 3am or 4am … and it takes forever to fall back asleep, if at all. I follow all the rules … no lights, blackout window curtains, no caffeine after noon, wear eye (or my winter knit snow season caps pulled down over my eyes), no late TV, and try to poop myself out first … but nothing works. The reports that I have been emailed by others … say that overseas clinical trials have found that both SLEEPING INSOMNIA issues and HEARING LOSS issues are the newest “symptoms” of Myasthenia GRAVIS. But, because this information is relatively new, MG researchers are still uncertain, if these “symptoms” are because we have MG … or because of the required MEDICATIONS that we must take.

Such an example is the dangerous steroid PREDNISONE … that many of us are finding extremely difficult to taper down on and stop. That drug gave me SLEEPING ISSUES, WEIGHT GAIN, medically induced DIABETES II, and being forced to take three other meds (all start with “P”) to prevent stomach, GERT, and other issues. I finally got a terrific endocrine doctor, who tapered me off of people shooting me up with LANTUS products. I took two years, but I have been LANTUS shooting FREE, since 10-25-2022. My HORRID A1c scores are now 6.1 or 6.2 … or A1c readings on the five minute clinic A1c test … and not the SONORA QUEST LABS blood draws. So I have been safely under the A1c scores that all the people on tv ads are trying to achieve.

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>The </font>following<font color=”rgba(0, 0, 0, 0)” face=”inherit”> </font>articles … <font color=”rgba(0, 0, 0, 0)” face=”inherit”>that I have been emailed by others, relate to problems MG patients like me have encountered … so try GOOGLING to access them online … and print out copies to hand out to your own PCP, Sleep doctor, hearing doctor, and others accusing of you having something else … and call you TANGENTIAL or a POOR or DIFFICULT HISTORIAN, when you are trying to carefully explain all your MYASTHENIA GRAVIS symptoms.</font>

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>
</font>

“PAIN, HEADACHE, and OTHER NON-MOTOR SYMPTOMS in MYASTHENIA GRAVIS” by Olivia Tong published online 5-3-2018 Springer Science + Business Media, LLC (see sleep problems on … pgs 5 and 6)

MELATONIN … MAYO CLINIC PRESS website dangers of “Delayed sleep-wake phase disorder” and Insomnia … “its effects on sleep quality and total sleep time aren’t clear”. It also states on their webpages that MELATONIN and supplements “REDUCE BLOOD CLOTTING” and “INCREASE THE RISK OF BLEEDING”. Further on, it states that MYASTHENIA GRAVIS patients should never be given MELATONIN as it “CAN STIMULATE IMMUNE FUNCTION and INTERFERE with IMMUNOSUPPRESSIVE THERAPY”.

“RELATIONSHIP BETWEEN HEARING FUNCTION and MYASTHENIA GRAVIS: A CONTEMPORARY REVIEW” by Massimo Ralli in the 2017 Journal of INTERNATIONAL MEDICAL RESEARCH.

“HEARING TESTS CAN HELP DIAGNOSE, MONITOR MG, STUDY SUGGESTS” February 5, 2019 on this website of http://www.myastheniagravisnews.com/news/hearing-tests …. The article goes on to state the STUDY was published in the journal FRONTIERS IN NEUROLOGY. This article and another one state that TEOAE and DPOAE HEARING TESTS are the newest way to test and confirm that a patient has MG … just as well as the AChR Antibodies testing that they did on me.

I ZOOM monthly with four other MYASTHENIA GRAVIS groups … in the valley of Phoenix Az, in SUN CITY, AZ, in Minneapolis, and in LONDON. If I get email links from my four support groups, then I can ZOOM with other MG support groups in ATLANTA and SOUTHERN CAL. The LONDON MG Support group has a large collection of MG reports to download and handout to the MG CLUELESS community, if you ever have the risk of a possible MG crisis. One of their papers is called and can be found at http://www.myaware.org/anaesthetic-and-myasthenia Also they have handouts ONLINE to download and hand out to 911/ambulance crews, emergency rooms, anesthesia providers, and police. This is very important to have with your medical papers, when you are going to your appointments and any errands, … especially when your MG mouth, speech slurring, droopy eyes, weak legs, and vision problems make every one automatically assume that you are drunk … but without the liquor smell.

 

It took me EIGHT MONTHS to be diagnosed, but I am currently in MG REMISSION, using Mycophenolate Mofetil (Cellcept) and Pyridostigmine (Mestinon), as well as 8 other MEDICATIONS, (5000 MGs plus daily) including four blood meds, but not any more of that dangerous steroid Prednisone.

Due <font color=”rgba(0, 0, 0, 0)” face=”inherit”>to the Phoenix area being filled with clueless doctors, as well as also two hospitals, being staffed by similar physicians (including three “neurologists ??” that I can name), I remained undiagnosed for EIGHT LONG SUFFERING MONTHS .. until I was finally diagnosed by a very intelligent third floor nurse. But we had to communicate by pen and paper only. The first hospital could not diagnose me with MG, and they were not happy that all their tests clearly proved that I did not have a STROKE. Instead, due to an overdose of SEDATIVES for MRI testing, I got a CODE RED … and died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE, due to an overdose of SEDATIVES, given to an </font>undiagnosed<font color=”rgba(0, 0, 0, 0)” face=”inherit”> patient. So that first hospital gave me three pneumonias, three antibiotics (one of which was a dangerous </font>MYCIN<font color=”rgba(0, 0, 0, 0)” face=”inherit”> drug), a collapsed right lung, a slit throat (TRACH), a PEG tube, a Foley Cath, and sent me to a second hospital … so I had 100% SPEECH and HEARING LOSS. Hence, the diagnosing nurse and I communicated by pen and paper pad … or in the therapy room … a dry erase board tablet and dry magic markers. The next day she printed out and gave me the news of MY DISEASE … </font>

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>WWW.UPTODATE.COM/contents/myasthenia-gravis-the-basics … which told me what I had, the symptoms, the tests, and the treatments. That is the “patient” version. At another of my five 2020 hospitals, they had a MED LIBRARY and felt sorry enough for my condition and “need to know” … that they printed out the physician and medical VERSIONS, as well as a new CLEAN COPY PATIENT VERSION for MG … of what the diagnosing nurse gave me. I was so absolutely HAPPY to finally DIAGNOSED … after eight months of SUFFERING … that I started right away HIGHLIGHTING my symptoms with dry erase markers (used in therapy to talk with a “WHITE BOARD”) and writing “ME TOO” all over … all four pages. Those “pages” that I got from the diagnosing nurse … turned into one very colorful mess of pages … between all the colored markers and my MG weak, toasted fingers trying to use a pen, with both hands together to try to write in the margins. </font>

She recognized my various symptoms, BELIEVED ME, and explained to her supervisors that I needed a NEURO-CONSULT (she got me two … March 20th and 24th, 2020) and AChR Antibodies tests. I ended up getting SIX TESTS … all VERY SERO-POSITIVE. Three were BINDING, two were BLOCKING, and only ONE MODULATING. Then, they brought over a NEUROLOGIST from BARROWS NEUROLOGICAL INSTITUTE next door … and she got me through all the NEW MEDS and the five days of IVIG treatments, on top of the meds, that I was already taking, for the illnesses that the doctors thought I had … but never had.

myastheniagravisnews.com

Hearing Tests Can Help Diagnose, Monitor MG, Study Suggests

The inner ear function in myasthenia gravis (MG) patients is significantly impaired, and hearing tests can serve as a diagnostic and monitoring tool.

[Jonathan A]

I had just turned 68 in June 2019 at age 68. My first symptoms … hand weakness and eye issues appeared on JULY 25, 2019. I would not be finally diagnosed till 8 months later, on MARCH 24, 2020 … by a third floor nurse at the second of five 2020 hospitals. She believed me … as she had encountered MG patients in the past, transferred from BARROWS NEURO next door in Phoenix. Eight months of clueless doctors, and two hospitals, could not diagnose their way out of a paper bag, including an eye doctor, and three hospital “neurologists” that I can name. Newly recovered hospital papers from PICNIC HEALTH RARE DISEASE FOUNDATION showed someone ordered AChR antibodies tests, that were released at 3am on 2-10-2020, that were very SERO-POSITIVE, but no one could understand them ??? So, the nurse at the second hospital talked them into doing a NEURO-CONSULT, and 6 AChR tests (3 binding, 2 blocking, and 1 modulating) … that were very SERO-POSITIVE too, so she was proved correct in recognizing my ACUTE MG. So I was then started on 5 days of IVIG.

 

The five 2020 hospitals did a lot of damage to me … a CODE STROKE (died of acute hypercapnic respiratory failure … overdose of sedatives for MRI), three hospital ICU contracted pneumonias, a TRACH, a PEG TUBE, IRRIGATION/DEBRIDEMENT SURGERY, 4 months of 100% HEARING LOSS (due to TOBRAMYCIN), and medically induced DIABETES II, due to large doses of PREDNISONE. But I am still in MG REMISSION, and taking over 5500 MGs of MEDS daily, including CELLCEPT and MESTINON. But my Diabetes II is in remission … no more LANTUS shooting up.

[Jonathan A]

I am still on 60 MGs three times a day. I don’t seem to have any side effects … several of my other 14 meds have side effects. It took me 8 months to be diagnosed with MG. My problem in Phoenix is that every doctor I met is MG CLUELESS, and can not diagnose their way out of a paper bag. I was finally diagnosed by a third floor hospital nurse at the second of five 2020 hospitals. She had known a couple MG patients … so she knew her shit … and did not call me TANGENTIAL or a DIFFICULT HISTORIAN, in their write-up reports, when I tried to discuss all my MG symptoms with “doctors” ????

I have had no problem getting my med so far … can order or auto refill on website. I use FRYS GROCERY PHARMACIES … it is called KROGER’s in other states.

[Jonathan A]

Despite having a SUPER RARE INCURABLE disease of MYASTHENIA GRAVIS, I am in REMISSION and fairly stable now, since I escaped from my fifth hospital on BLACK FRIDAY 11-27-2020. For eight months, not a single doctor could diagnose or even come close to guessing my MYASTHENIA GRAVIS illness. I was finally finally diagnosed by a third floor nurse at the second of five hospitals, who recognized my MG symptoms, from a couple other MG patients that she had met previously. They say that most people get stressed and depressed when they find out that they have MG. I was just THRILLED … after 8 months of MG CLUELESS doctors and all the mistakes they made … they gave me 3 pneumonias at once, a cath, a trach, a peg, a CODE RED, a collapsed right lung, MORPHINE, FENTANYL, TOBRAMYCIN (that gave me 100% hearing loss for 4 months), a overdose of SEDATIVES for MRI Tests (the CODE RED), and large doses of PREDNISONE that gave me MEDICALLY INDUCED DIABETES II and ONSET INSOMNIA.

BUT I now was THRILLED as I finally had a name for my disease MG, and the diagnosing nurse talked her supervisors into getting me a NEURO-CONSULT, 6 AChR tests THYMUS X rays and a treatment, so I have been GOOGLING and ZOOMING MG ever since.

My GO-TO stress reliever is to GO SLUMMING. Pick a day or two each week and have a

“FU*K IT DAY”. Set aside a day to do something you enjoy … sleep in all day, go to a movie/live show, ride a horse, go ice skating, sing in a church choir, eat out, or volunteer somewhere. IGNORE that you have MYASTHENIA GRAVIS, a fatal disease with countless pricey meds (5500 MGs daily) and 6 or 7 specialty doctors/appointments, and countless piles of medical papers on your kitchen table, along with appointment calendars, and bills.

Because the doctors were so stupid and MG clueless, I had 100% HEARING and VOICE LOSS for 4 months plus … and my fingers and legs were hopelessly weak, so once I was out of the fifth hospital, I disappeared and went “SLUMMING”, for a few hours each week. So I went to the nearby MESA COMMUNITY COLLEGE Music Department and signed up for two voice classes to restore my voice (after my throat was slit and trached), and later I added a Theatre Department Costume Lab class and have been rehabbing my fingers too, hand and machine sewing, as well as acquiring new friendships, seeing the costumes I sewed onstage in musicals, and getting course grade credit (dad’s parents owned a Tailor shop in Marquette … so us 7 kids could sew early in life) Because I am old enough now .. I get the SENIOR TUITION DISCOUNT RATE of $42 to $48 per credit hour for a whole semester of ESCAPING from the MEDICAL WORLD/APPOINTMENTS/TESTS, … and just REHABBING my BODY, FINGERS, and a SUPERDRY SORE THROAT/VOICE (that was not allowed to eat or drink ANYTHING for over 3 months) in my first three hospitals ((ENTERIC THROAT & PEG TUBE HOSE “Nourishment” … that filled my right lung instead three times)). So just STEP AWAY from reality … and forget that you inherited a super rare neuro-muscular disease gene from your German grandmother who died of a similar LUPUS disease, before you were born. I was finally able to “BE ME AGAIN” … by forgetting … for a day … that I was ever sick at all. I am currently still in REMISSION from MG and medically induced DIABETES II, thanks to INTELLIGENT doctors, who I found to replace the MG CLUELESS losers.

I am still on my original doses of CELLCEPT and MESTINON, that they started, once I was found to be HORRIDLY SERO-POSITIVE, and my replacement NEUROLOGIST KILLED the PREDNISONE … so my A1C scores really dumped … so they stopped shooting me up with double doses of several LANTUS products. Just GIVE your MG and EVERYONE else the”finger” and just escape for a while from REALITY and go SLUMMING … it so helps your mental health.

[Jonathan A]

MY MG was finally diagnosed and treated on March 24, 2020 and i am still currently in REMISSION. I belong to 4 MG SUPPORT groups and ZOOM also with ones in ATLANTA and in SOUTH CALIFORNIA. They say that to stay alive … YOU NEED TO BE YOUR OWN HEALTH QUARTERBACK. All the MG support groups have been WONDERFUL, and every monitor of each MG group knows by our discussions and groups … which doctors are MG sauvy … and which are MG CLUELESS DOCTORS .. who don’t even know what MG means in ENGLISH. Find a MG SUPPORT Group in your area, or anywhere in the world, and they know the GREAT NEUROLOGISTS and the LOSERS … and they have feelers out to other MG groups that can get the name of a TALENTED NEUROLOGIST … that is willing to give you THYMUS Xrays and the three AChR ANTIBODY TESTS for binding, blocking, and modulating. It does not matter WHERE you live … MG people know people who know people.

I ZOOM with East PHOENIX, West PHOENIX, CAlifornia, ATLANTA, Minneapolis and LONDON (check out their ENGLISH MG WEBSITE … http://WWW.MYAWARE.ORG) The MYAWARE.ORG website has lots of MG information sheets that you can print out and download and give to your doctors and any PARAMEDICS, 911 crews, DENTISTS, EMERGENCY ROOM TEAMS, and especially ANESTHESIA PROVIDERS.

I had a CODE RED at the first of five hospitals. They could not diagnose my MG SYMPTOMS … so they decided to sedated me with ROCURONIUM and PROPOFOL, for MRI scans. It was a drug overdose of anesthesia, and my breathing was already suppressed. So the additional sedation did me in. ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to AN OVERDOSE OF ANESTHESIA … when I was found not breathing and unresponsive in POST ANESTHESIA PATIENT CARE. So gather as much information, handouts, and doctor referrals as you can and BE SAFE !!!

[Jonathan A]

I was finally diagnosed with very SERO-POSITIVE MYASTHENIA GRAVIS on 3-24-2020, after 8 months of trying to get a diagnosis. I was finally diagnosed, by a more intelligent third floor nurse, at the second hospital, who met patients that had my symptoms, and got me a consult with the the correct tests. I belong to and ZOOM with 4 MG support groups. I am still on my original diagnosed dosage of 60MGs times 3 for PYRID (MESTINON) and 1000MGs times 2 per day for MYCO (CELLCEPT). I was also on PREDNISONE … but it is a VERY DANGEROUS DRUG and I quickly tapered off it. It gave me weight gain, and medically induced INSOMNIA and DIABETES II.

What I always wonder is … are my problems due to the side effects of my MG or the side effects of over 5500 MGs of my 12 meds? So far when I read my meds, 5 cause Diarrhea and only one causes Constipation. So far, I have had neither problem, but my floaters do look slicker and smoother, than the Kibbles ball-like “clusters” look pre MG.

One warning that I have found out. If one of your many doctor specialists wants you to do a POOP-POT or that FECAL SMEAR test, both the test instructions on the product and on their website, SAYS don’t do those tests if you are always having DIarrhea. I believe it causes you to get false POSITIVES, because of great chance of having a touch of blood detected in the tests, especially if your doctors, don’t know much about MG … and they are also giving you any Blood anti clotting or thinning meds. So as my 4 MG support ZOOM Groups say … you need to be YOUR OWN HEALTH QUARTERBACK, as you know best what MG is … and all the meds you are taking. STAY SAFE and INFORMED!!!

[Jonathan A]

REPLY TO Linda-g … and every one else …

Linda mentioned “MYAWARE”. As I said above, I belong and ZOOM with 4 to 6 MYASTHENIA GRAVIS SUPPORT GROUPS regularly. MYAWARE is www. MYAWARE.ORG Go visit their website, as it has been a continuous godsend of information to me. I try to ZOOM with them monthly, even though it can be difficult, timewise. I live in ARIZONA, USA and MYAWARE is the main MYASTHENIA GRAVIS Support Foundation in the UNITED KINGDOM. So I have to ZOOM in to their meeting, 7 hours ahead of their posted meeting LONDON TIME. Their website is TERRIFIC to every MG patient world wide. They have all the MG PAPERS you could ever want. I keep downloading and printing these papers out to give to my CLUELESS/POORLY EDUCATED AMERICAN DOCTORS, who probably specialize too much … know a lot about one area … and little about other areas of medicine and ACCURATE DIAGNOSING.

MYAWARE has the usual MEDS DANGEROUS TO MG PATIENTS lists, … but this special MG support group makes the extra effort of having on their website … INFORMATION SHEETS to download and hand out to each type of person that you need…. PARAMEDICS, 911 crews, EMERGENCY ROOMS, Hospitals, DOCTORS delivering babies of mothers with MG, DENTISTS working on MG PATIENTS, and ANESTHESIA PROVIDERS who don’t know how easy it is to overdose and kill an MG patient with sedatives, when my breathing is already SUPPRESSED.

So please visit their website … and download any INFORMATION SHEETS they have. YOU NEED TO BE INFORMED to INFORM YOUR MEDICAL PROVIDERS … in order to STAY ALIVE and in MG REMISSION. YOUR LIFE DEPENDS ON IT !!

[Jonathan A]

My VERY SERO-POSITIVE MG has been in remission … since I left my fifth hospital of 2020 on BLACK FRIDAY 11-27-2020. I am currently on 180 MGs daily of PYRID and 2000 MG daily of MYCOPH … that are my original diagnosis dosages. I was forced by the hospital to take 60 MGs of PREDN. It, along with STATINS, gave me MEDICALLY INDUCED DIABETES II, ONSET INSOMNIA, and WEIGHT GAIN (after losing over 42 lbs … 198 to 155 lbs being undiagnosed for 8 months by every doctor who saw me … a 3rd floor nurse diagnosed me and talked supervisors into giving me a neuro-consult and antibodies tests). So my new ENDOCRINE doctor tapered me off the NASTY PREDNISONE and LANTUS SHOOTING UP by 10-25-2021.

So I am stable and doing well. With only MG side effects of ONSET INSOMNIA and HEARING ISSUES still remaining.

As someone said above … what is causing what ??? Is it the MG or my MEDS ?

So I have been carefully taking my MEDS religiously … as I don’t know what HELPS me and what HURTS ME !! I can not get anyone to give me any PILL RECONCILIATION … closest is people who say go to http://www.DRUGS.COM … and that helped.

In regards to your memory questions, I have no issues at all. I remember everything !!! from 5 months in 5 hospitals … and for 8 months searching for any doctor … who could diagnose his way out of a PAPER BAG. The only foggy part is the first hospital from FEB 4-27, 2020 … THAT GAVE ME … a CODE RED … ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE of SEDATIVES, given to an undiagnosed MG patient for MRI TESTS. That landed me in ICU where I was under constant sedation with FENTANYL and MORPHINE till I was sent to second of five hospitals undiagnosed. So the first hospital is a TOTAL FOG, except for certain remembered dreams or reality ?? (THANKS TO PICNIC HEALTH RARE DISEASE RESEARCH REGISTRY FOUNDATION, they have recovered over 1600 medical documents for me on a website patient porthole, so I can now NAME, DATE, and DOWNLOAD for other doctors, what happened). I valuable my memory being perfect … but, because they gave me ONSET INSOMNIA also … it takes hours to fall asleep, and lying in bed … all I am constantly reminded of … is the horror stories of what I went through … trach, caths, pegs, enteric tubes, breathing tubes, IVIGs, IV’s, PICC lines, slitting my throat, no food/liquids to swallow for three months, not being allowed out of bed for three months & pissing/pooping all over myself, and having to relearn to stand and walk in therapy. So I still can’t fall asleep for but a couple hours, then have nightmares, and wake up … unable to fall back asleep. So I am glad I still remember, but I often wish things were more fuzzy.

The only concession that I keep, steady .. to keep me on top is … is to always put things back where they belong, have a regular covered tupperware food container to keep all your 5500 MGS daily of 15 med bottles in, a standard bin/bowl to leave your cell phone/charger/keys/wallet/10 inch tablet notebook in, and if you happen to garden … and have the water running outside, put a one gallon bottle of water on the kitchen counter to remind you the hose is on. I try to “multi-task” … to get at much done, during my strong periods, before I need to go rest for a while … so be RELIGIOUS … everything has a place and gets charged, and you have a medical papers briefcase to grab automatically, with all your medical papers and contacts, if you or anyone needs to grab it, when you are too weak to think or walk clearly.

I belong and ZOOM with 4, and during some months, 6 MG SUPPORT GROUPS. They all say the same thing … YOU NEED TO BE PROACTIVE, and BE YOUR OWN HEALTH QUARTERBACK … to stay alive and in REMISSION, as there are too many poorly trained/poorly up-to-date medical professionals, that don’t know what MG means in ENGLISH, even if you write it out completely for them to read (and goggle on their cell phones … like two of my DUMPED “doctors?? … always did, when ever I asked questions … such as is “……” a live or dead vaccine?)

STAY SAFE … WISH YOU ALL WELL !!!!

[Jonathan A]

As a followup to my earlier answer  ….   At the moment I am still in MG REMISSION since I got out of my 5th hospital of 2020, on Black Friday 11-27-2020.   At the five hospitals, I was given over 90 medications, and my med list is still growing as I receive my new, just discovered missing hospital reports.

Due to heavy doses of sedatives and three antibiotics I had 100% hearing loss for over 4 months.   Then the hospitals started dumping STATINS and STEROIDS (especially high doses of PREDNISONE), so the hospitals also gave me MEDICALLY INDUCED DIABETES II. Once those drugs were tapered and KILLED   ….  my numbers of 350-400-high dumped to 113-120.  So my new Diabetes doctor finally tapered me off of everyone shooting me up with LANTUS products … once or twice a day  … by 10-25-2021.

So whatever drugs that you are considering,  FIRST run them by an INTELLIGENT MG SAVVY NEUROLOGIST, who is familiar with all the MEDS very dangerous to MG patients  … over 200 so far.  I am stable and in REMISSION NOW  … and I do not want to get a  CODE RED and DIE again.   Death by ACUTE HYPERCAPNIC RESPIRATORY FAILURE  … due to an overdose of two ANESTHESIAS  … given to an UNDIAGNOSED MYASTHENIA GRAVIS PATIENT  … for MRI & CATSCAN  TESTS.  .

So be INFORMED about the risks and side effects of any meds  … that you may wish to add to your current daily dose.  I take over 5500 MGs daily to keep me stable.

[Jonathan A]

I still have HORRID ONSET INSOMNIA, ever since I started showing MG symptoms on July 25th 2019.    I remained undiagnosed till late March 2020.  My insomnia is still HORRID, and because most people don’t know ZIPP, about MYASTHENIA GRAVIS, I still don’t know if my issues are due to the SIDE EFFECTS of MG, my MEDS, or being stuck for over 5 MONTHS in 5 HOSPITALS with all their meds, IV lines, life support, cold rooms, paper thin short gowns, lights always on or what.

I have had three sleep studies  … and no one would give me the results.   Fortunately ALL STRIPES and PICNIC HEALTH RARE DISEASE RESEARCH FOUNDATION REGISTRIES have recovered over 1600 medical documents, tests, and consults  … mulit pages in length.   So I have the tests results now.   I just need to get a referral to a doctor who is familiar with sleep studies and MG.  On two tests, I had 11 minutes and 0 minutes of REM sleep.   So I keep GOOGLING and researching.

I am on heavy doses of CELLCEPT and MESTINON.  AVOID  MELATONIN AT ALL COSTS.   The medical drug websites say that MELATONIN is very dangerous to any of us on IMMUNO-SUPPRESSION MEDS.  MELATONIN revives our immune system  … while our drugs are suppressing our immune system  … so our bodies don’t attack our cells.  I am still trying to find a sleep solution.   You always feel like SHIT .. when it takes 3 hours to get asleep, and then you wake up to early at 5 or 6 am …and rarely get back asleep.  So with only three or four hours of sleep  … you are the walking DEAD, and go lying down constantly.

 

[Jonathan A]

I do not work any longer in my career … as I hoped to.  My first symptoms of ACUTE OCULAR MG and GENERALIZED MYASTHENIA GRAVIS appeared on July 25th, 2019.  That morning I tried to switch the metal gates in the neighborhood’s square concrete IRRIGATION BOX.  It took 15 minutes of trying to get enough finger strength to pull the gates up.   My arms and legs were pooped out and I went straight back to bed.  Then it was the eye problems, droopy eyelids, eyes fighting each other to see which BEST,  dying every afternoon … legs and fingers being pooped out, etc. etc. etc.

It took me EIGHT MONTHS for a diagnosis of MG  …. there was no a single doctor, eye doctor, neurologist, neuro-surgeon    … who was able to diagnose their way out of a PAPER BAG.   So I started using up a lot of my unused SICK DAYS, calling into the sick line, if I had a bad morning (before my pm airport shift)  … or dropping a shift day on my computer calendars, with some other coworkers picking up my shift for extra $$$.    I  was still UNDIAGNOSED in OCTOBER 2019  … so I put in for an early retirement, medical leave for OCTOBER  30, 2019.       Still no one could diagnose me  …. everyone MG CLUELESS.  I was finally diagnosed by an experienced third floor nurse, eight months later in late MARCH 2020,  …  who recognized my symptoms instantly, as she had met people like me as patients.

She explained to her supervisors what MG was  … and they did a NEURO-CONSULT and  THYMOMA TESTS.  I am HORRIDLY SERO-POSITIVE.  They gave me 5 days of 5 hours of IVIG, CELLCEPT & MESTINON.   I am now in REMISSION, after over 5 months in 5 hospitals in 2020, after recovering from all the mistakes the doctors made.

Don’t be afraid TO WALK OUT the door and find a REAL DOCTOR !!!!  There are a few nurses, NPs and younger doctors  …  that have actually met patients like me and know what MG means in ENGLISH.

[Jonathan A]

In the past, before I started getting Myasthenia Gravis symptoms on July 24, 2019 ( I was finally diagnosed by a hospital nurse on March 20, 2020 after an 8 month search for an experienced doctor), I had never taken any pills, or been in a hospital,  in my life EVER.

So now I take over 5500 MGs of meds per day, including immuno-suppressant drugs.  So as you said, I am now FORBIDDEN, from donating plasma, blood, or ever sperm  … as it could especially affect babies and pregnant ladies.

In the past, I have never donated any blood, as every time, my PCP wanted blood for testing, the nurse ALWAYS had trouble finding a vein.   Now that I have MG, and spent five months in five hospitals in 2020, I am finding the nurses are being better trained with drawing blood, doin IVIG, and putting blood draw “ports” in each arm.   Those “ports” only last so long, that I even had a nurse at one hospital, cut off my hospital ID bracelet with a scissors, to find a fresh section of arm wrist skin, to do a new “port” placement.  I was not fed any hospital food for the first three months, so I had constant IV’s and later a PEG TUBE keeping me stable.

So YES,  I believe I did get blood or plasma donations.  Once that third floor nurse recognized my MG symptoms, after 8 months of doctors couldn’t, she explained my disease and got me an experienced doctor who did a NEURO-CONSULT, and ordered 6 antibodies tests and a thymus test. I had HORRID scores (so they repeated BINDING twice and BONDING once),  so the nurse saw me through 5 days of 5 hours of IVIG treatments from March 26-30th.  So I believe that is some blood or plasma infusion  … or transfer out and remix ?? with fresh.  I am now in REMISSION since I left the fifth hospital on November 27, 2020.

I have not needed any further IVIGs .. so far.   The first hospital could not diagnose MG, so I was kept sedated with MORPHINE and FENTANYL, from Feb 5 to my Feb 27th transfer to a second hospital in another city, where I was fianlly diagnosed on March 24, 2020  … so I have no idea, what I was given, when I was sedated, undiagnosed, and in wrist restraints at the first place.

So having been through PURE HELL, I really am thankful for blood donors, but have to say NO, when they ask at schools and churches, during their blood drives.  MY BODIES FLUIDS ARE NOW POISONED  by 5500 MGs a day of IMMUNO-SUPPRESSANTS, BETA BLOCKERS,  STATINS, STEROIDS like PREDNISONE, five BLOOD THINNERS, a MALARIA drug?, and the drugs thatare given to LUNG/KIDNEY/HEART transplant patients.

ALL STRIPES and PICNIC HEALTH RARE RESEARCH FOUNDATION REGISTRIES have been terrific in recovering over 1600 medical documents, tests, and consults … so I now know that names of over 90 drugs, that those five hospitals dumped into me, including 4 antibiotics to help cure the three different PNEUMONIAS, that I contracted in the ICU of the first hospital.

So … if you have clean blood or plasma, try to donate, when your church or school comes asking.

[Jonathan A]

I have been in  REMISSION from severe MG since left my 5th hospital of 2020 on Black Friday 11-27-2020.   Every doctor who saw me in 8 months wasn’t helpful.  A nurse at the second hospital had seen MG patients in her hospital career, and talked her NEUROLOGIST friend about my  10-12 symptoms.  He gave me a NEURO CONSULT and I had 6 superhigh SERO-POSITIVE Antibodies scores.  They were so horridly high that he repeated BINDING twice and BLOCKING once.

So I am safely in REMISSION  … after only 5 days of 5 hours of IVIG  … and same dosage of meds always since then… 3 x 60 MGs daily of MESTINON and  2 of 500 MGs of CELLCEPT in Am and PM equal to 2000 MGs of CELLCEPT daily.   I have severe ONSET INSOMNIA and it still takes hours to fall asleep  … you keep waking up and only get 3 – 4 hours sleep every night.

I am now looking for a NEW decent primary care doctor  … as my current doctor keeps taking my blood but never telling me the TEST RESULTS, never will talk about my 12 meds  (5500 MGs daily), or getting me a MEDS RECONCILIATION CONSULT from someone/anyone.  I am still on 5 blood thinners/anticlots from 5 doctors, who were unfamiliar with MG diagnosing  … and I have O positive thin blood already.

My other 4 DOCTOR SPECIALISTS are MG SAVVY, and extremely helpful.  Since I have been in REMISSION  for over two years now,   I take my MEDS RELIGIOUSLY,  and never change anything, as I have been through 5 months in 5 hospitals in 2020 … recovering from doctor mistakes such as 100% hearing loss (meds antibiotics OTOTOXICITY) for 4 months, 100% speech loss for 4 months (they slit my throat & trached me), and a CODE RED due to an anesthesia overdose because  …  as an undiagnosed MG patient, I moved too much during X Rays  … phlegming and choking, so was oversedated for MRI/CAT tests.

So please be careful and make absolutely sure that you have an MG SAVVY doctor to assist you.

Thanks to a great and understanding ENDOCRINE DOCTOR who was MG SAVVY, my score is now 78 to 112 and A1c of 6.1 and NO MORE SHOTS.  My poor MG clueless primary doctor did not understand MG, diabetes, or LANTUS  … so was a total failure.

SO surround yourself with INTELLIGENT, PATIENT-FRIENDLY, MG SAVVY DOCTORS who will help you taper off.  If  your current doctors are not so hot, WALK OUT THE DOOR.  You can find a new doctor, but it was hard for me, after my  first hospital’s ANESTHESIA OVERDOSE  … I was not breathing and unresponsive due to ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA.  You only have ONE BODY  … SO BE SMART and ALIVE  … as we all know how HORRID MG SYMPTOMS are  … you life STOPS and you are always home, and returning to bed to get your strength and “eating/swallowing/walking” abilities back.

 

[Jonathan A]

I have had MG symptoms since 7-25-2019  … but it took 8 months  .. before I was finally diagnosed with MG by a very intelligent third floor nurse, who recognized my MG symptoms from other MG patients that she met in her career.  Every doctor who saw me couldn’t diagnose me … including an eye doctor,  two Neurologists, and a Neuro-Surgeon  … who could not even recognize MG in their own SPECIALTY.     So when that WONDERFUL NURSE finally diagnosed me with MYASTHENIA GRAVIS  … on 3-24-2020, I was TOTALLY THRILLED  …    I now had a NAME for my disease,  all my 10 to 12 symptoms, I saw on her handout from http://www.uptodate.com  of MYASTHENIA GRAVIS: THE BASICS  …   and matched her website printout exactly.

I was VINDICATED.   The nurse talked her doctor friend into giving me tests and a NEURO-CONSULT  … and she was DEAD-ON CORRECT. I was extremely SERO-POSITIVE.  I have been in REMISSION …  since I left the FIFTH hospital on BLACK FRIDAY 11-27-2020  … and I have been  GOOGLING LIKE CRAZY ever since to educate my  new MG doctors, and be my QUARTERBACK.

I have been lucky mentally, except when I was undiagnosed with MG  in the first two hospitals, in wrist restraints, in vibrating white ski boot foot restraints, with 100% hearing and voice loss due to MEDS OTOTOXICITY, and to make matters worse  … the two RARE DISEASE RESEARCH FOUNDATIONS finally recovered over 1600 of my medical documents, tests, and consults  … describing all the tests, missed diagnosis opportunities, my CODE RED, my three PNEUMONIAS contracted in the first ICU,  and the fact they kept me on MORPHINE and FENTANYL for no reason at all for all 27 days at the first hospital of five.

It has been a great relief, to know my disease and my status  … so I am close to BEING ME AGAIN, for the first time since July 2019.   I hope that I will not need MOOD meds in the future, because I do not know which of my MEDS … 5500 MGs daily  …  is keeping me MG stable and which are giving me side effects.

I have been through HELL,  had a CODE RED  &  died on February 5, 2020 at 8:37 pm  of  ACUTE  HYPERCAPNIC  RESPIRATORY  FAILURE,  86        X-rays,  and successfully got tapered off  PREDNISONE,  so that my Medically Induced Diabetes from said PREDNISONE is in REMISSION also.     So the worse is behind me now  … and I intend to never be near a MG clueless hospital again.  If my dad lived to 89 with one kidney since seven, and his father lived to 98 years old,  I can at least do the same  … if I remain educated about MYASTHENIA GRAVIS  as best as I can, and continue ZOOMING with my MG Support Groups.

So,  in comparison to where I have been,  I feel nothing can affect me mentally now,  as I have been through HELL,  and have better educated myself to medically be a SURVIVOR  … and stay POSITIVE.

[Jonathan A]

I  AM  ME  AGAIN  !

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

For eight long, suffering and weak months, no doctor could diagnose my ACUTE OCULAR and GENERALIZED MG, despite showing EVERY POSSIBLE MG SYMPTOM, but one.   I was finally diagnosed at the second of five hospitals of 2020.   A third floor nurse recognized my symptoms on March 24, 2020  …  and wrote on my paper pad   … “I know exactly what you have.  We have patients right here at this hospital that have all your symptoms.  You have MG!!!”   So she got a doctor friend to do a NEURO-CONSULT and order tests.  Thymus fine … but my three antibodies tests were so SERO-POSITIVE with “over the moon” scores  … that they repeated the tests again.

I have been IN REMISSION since BLACK FRIDAY  11-27-2020 when I left the fifth hospital.

So I am feeling much better, can drive, see, knee in the garden to work  … knowing I can stand … without having to crawl over to a chair, crawl into it and rest  … in order to try standing and going inside.

I have been slowly venturing out more driving and to activities, church, shopping for items .. besides necessary meds and food.

David is one very BRAVE SOUL.    I can’t leave town.   It took 8 months to be diagnosed and every doctor failed me  …. and even when I KNOW   …  I HAVE MYASTHENIA GRAVIS,  I am still trying to educate my new doctors (except for my terrific NEUROLOGIST) about what is this disease they never heard of  … is all about  … and why my IMMUNO-SUPPRESSANT therapy makes all my blood tests number consistently SCREWY and ANEMIC.    What chance would I have on an airplane or a cruise ship in a strange city to stay ALIVE ??

But now that I AM ME AGAIN, …. I so want to escape, forget I have a fatal disease for just ONE DAY and LIVE.     So I pick one day each week and have a …   F–k  It day  .. and escape  … see a movie, eat out, go to an afternoon theatre matinee, or walk down around the nearby lake.

Because I had 100% hearing and 100% talking/singing loss for 4 months in the hospitals,  I wanted therapy to BE ME  … so I went last semester to a MUSIC DEPARTMENT VOICE singing class, 3 hours each Tuesday for one hour credit  … at the local community college.  Only cost $40  senior rate  … and my voice is coming back.  This semester I am taking two,  one hour credits  … a different music class and production class credit sewing in the theatre costume shop.   I get out, have fun, meet new people, and help my local community college theatre   … totally forgetting for a while,  1.5 years of  MG weakness, 5500 MGs of meds a day,  …  and improperly educated medical people  … that gave me a CODE RED  … due to ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE of ANESTHESIA given to an undiagnosed MG patient  … so that I would stay still for MRI tests.   So take pleasure in your small TRIUMPHS.  It helps you forget the dark days from before.

[Jonathan A]

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

My symptoms started  7-25-2019 and after 8 months of CLUELESS DOCTORS not diagnosing me, I was finally diagnosed  on 3-25-2020, by a third floor nurse, who recognized all of my MG SYMPTOMS and talked a hospital doctor into giving me a NEURO-CONSULT and three antibodies tests…..  I was so SERO-POSITIVE that they repeated the three tests  … to confirm they were accurate.

I have been in MG REMISSION since I left the fifth hospital on BLACK FRIDAY  11-27-2020.   People talk of bad side effects  …. but what is KEEPING ME SAFE … and what is KEEPING ME ill with still horrid onset insomnia and  not getting 100% hearing back after TOTAL SPEECH and HEARING LOSS for 4 months due to sedative and antibiotic OTTOTOXICITY ???  SO I take my pills RELIGIOUSLY  … to STAY SAFE.     So what am I doing right ????  I have had only my original 5 days of 5 hours of IVIG, upon my diagnosis  FINALLY   … so why am I in better shape that most everyone  … in the FOUR MG SUPPORT GROUPS that I ZOOM with?

Does 2000 MGs of CELLCEPT keep me safe?    My new Endocrine doctor killed my STEROID PREDNISONE, that with STATINS, that another doctor dumped in me  … gave me weight gain, INSOMNIA and MEDICALLY INDUCED DIABETES II.   That great doctor also tapered and stopped all the LANTUS PRODUCTS that the hospitals were shooting me up with … so my prick scores are 70 to 113  … with A1C of 6.1  … so he killed that too, and I am only on 1Mg of Glimipride a daily.   So are my drugs different than your drugs  … so I only have INSOMNIA and some hearing issues  …   after 4 months of 100 % hearing loss in first 3 hospitals due to a combo of sedatives and TOBRAMYCIN  ???      So I am safe … but why?   I have a TERRIFIC old school MG NEUROLOGIST, who is keeping me safe  … but all my other doctors I have to constantly educate them about MG  … and why my blood tests are constantly irregular/anemic …  due to my IMMUNO-SUPPRESSANT THERAPY meds.

[Jonathan A]

I know the exact day.  About 5:30 am on July 25, 2019.  I needed to go to the end of my street to switch the metal pull up gates  (one out and one back in) at the concrete irrigation box  … to divert the west bound ditch water to the south bound ditch  water  to go to my street of yards.  My fingers were too weak to pull up the metal slide (about 18″ by 18″)… so I jiggled right side with both hands  … then left side with both hands … and repeated left side  and right side of the metal slide constantly pulling up and out of the vertical slot for about ten minutes.

Drove back to my house at street end … my legs were very weak, as well as my fingers and sore arms  …  and needed to go back to bed.   It took a couple minutes to turn the doorknob to my front door, as I had no FINGER  GRIP  STRENGTH, to grab and turn the now slippery round metal knob to open my door.

Then the next couple days  …. the eye problems started … when I was driving at night.  Droopy eyelids, two eyes competing with each other to see who was THE BEST, and every street light was a CHRISTMAS STAR with a dozen rays of light hitting my car’s windshield, like the covers of one CHRISTMAS CARD artwork.  It was hard to drive.  Right eye closed, right hand driving car, left hand and fingers holding left eyelid open more to see.

So I called C—- Heathcare. Earliest appointment was August 9th, 2019 with an NP.  For 6 months of C—- and their referrals got NO DIAGNOSIS.  So in utter DESPERATION, went to the URGENT CARE CENTER attached to a hospital.    That first hospital gave me a CODE RED, three PNEUMONIAS,  in their ICU, and a $1400 late night ambulance ride to a second hospital.  Three weeks later, after continued doctors failing me at the second hospital, I was finally diagnosed by a third floor nurse at the SECOND hospital on March 24, 2020.  For EIGHT LONG SUFFERING MONTHS, I got every single MG symptom, and EVERY DOCTOR and REFERRAL, as well as two months in the first two of five hospitals of 2020 failed me.   The first hospital within 30 hours gave me a CODE RED. I died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE OF ANESTHESIA  … given to an undiagnosed MG patient. They did not like my moving, choking, staying on my side, and phegming during X rays  .. so they gave me a sedative OVERDOSE  … to have me stay put for MRI and CAT SCANS …. as they assumed TOO, that I had a BRAIN STROKE or TOXIC METAL POISONING  .. but didn’t.

The third floor nurse recognized all my MG symptoms, as in her career, she had had a couple MG patients on her floor.  She talked the hospital into doing a Neuro- Consult, Thymus test, and three antibodies tests.   I was so SERO-POSITIVE .. that they repeated the tests  … thinking they were WRONG.  I had five days of five hours of IVIG  …. and have been stable and in REMISSION since I left the fifth hospital on BLACK FRIDAY  November 27, 2020.   Taking same dosages of CELLCEPT and MESTINON  … without issues.   They started me on a high dose of PREDNISONE along with STATIN drugs  … and that gave me MEDICALLY INDUCED DIABETES II,  which my new endocrine doctor got tapered  … so that is in REMISSION too.

[Jonathan A]

The only way to stop the weight gain is to    … GET THE HELL OFF OF PREDNISONE.  You need to find a knowledgeable “old-school” doctor, who can taper you off of it successfully.  I also was on 60 MGs daily, in addition to over 5000 MGs of other meds, daily … at home after I was released from the fifth hospital of 2020 on Black Friday 11-27-2020.

For 8 long suffering and toasted muscle strength months, not a single doctor could diagnose my ACUTE  OCULAR  AND  GENERALIZED  MYASTHENIA  GRAVIS  illness.  I was finally diagnosed by a very intelligent and experienced third floor nurse, who recognized all my MG symptoms  … and talked outside doctors .. into giving me a NEURO-CONSULT and also THYMUS/ANTIBODIES TESTS.

Because every doctor did not know I had MG, they gave me STATINS too.  THE STATINS and STEROID PREDNISONE gave me medically induced DIABETES II and scores of   … 350, 400, and HIGH.  At the fifth hospital, they stopped the PREDNISONE, and a new doctor tapered me off LANTUS products, so my MG and DIABETES II both in REMISSION.   The only thing that saved me from BALLOONING UP  … is that  … being undiagnosed with MG, I lost over 43 lbs in the first 6 months (198 to 155),   … and even more the next 2 months, so all the Prednisone got me back up to 196,  BUT I lost all my muscle tone, and was on ENTERIC and PEG TUBE feeding for over three months in three different hospitals for the first 4 months, losing even more than 43 lbs..

[Jonathan A]

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

So I belong to four MG support groups  … and am still in remission from MG  … and medically induced PREDNISONE DIABETES II  … so no more LANTUS shooting up.

I still do not understand why I am in much better shape  … that all my fellow support members, who are still trying to taper off NASTY PREDNISONE, more IVIG treatments, … and more pricey options.  So the two LESSONS I LEARNED this past year.

ONE  … Take your meds religiously.  I don’t know which ones help me and which ones give me insomnia and muscle fatigue still  … but I must do the same pills to STAY IN REMISSION.

TWO  …  I must be MY OWN QUARTERBACK  … with all my medical records, tests, med lists, and dangerous LISTS. I have a TERRIFIC OLD SCHOOL NEUROLOGIST from the U of M Medical School in ANN ARBOR  … and he is one of a handful of medical “professionals ???” that have seen and tested me  … who actually KNOWS what MG means in ENGLISH.  Keep a traveling medical papers briefcase/messenger bag with you at all times  … along with contact information, of those who have helped you and know what MG is.  I am still having to pull out records, reports, tests, and handouts  … from    http://www.myasthenia.org,    http://www.myaware.org   and the two RARE DISEASE RESEARCH FOUNDATIONS  (who have requested and found for me over 1600 inaccessible medical documents for me to show to my other doctors who ask).

My other doctors still do not understand MYASTHENIA GRAVIS. They do not understand how easily I died of a CODE RED due to an overdose of anesthesia for an MRI test  … and lost my hearing for four months due to three antibiotics , including TOBRAMYCIN.  Also I have to explain why I have irregular blood tests  … as they do not understand what 5500 MGs of drugs daily and 2000 MGs of immune-suppressant meds, screws around with normal test results.   Because of my meds, my immune system is TOAST and I am on blood thinners as well … and have O positive … the thinnest blood.

So BE EDUCATED  … and be prepared TO EDUCATE YOUR DOCTORS  … as your safety depends on educating others, and religiously taking the MEDS, that your NEUROLOGIST is using to keep you ALIVE and SAFE….

[Jonathan A]

On Black Friday this year   … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search.  I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine.  My new family doctor was scheduling his patients for WEDNESDAY  appointment MODERNA SHOTS and I got my first two in April and May of 2021.

Then on  12-28-2021,  I got my first MODERNA booster in a TEMPE, Arizona CITY WIDE program, where they offer shots  at two different schools in the morning one day each week.  I had no problems or bad reactions, at all, even though the doctors, who were not able to diagnose my MG, had been still prescribing 5 blood thinners, anti- clotters, and a dangerous BETA BLOCKER and STATIN  …  for an MG patients.  Usual problem.  No doctor could diagnose my MG (a hospital nurse finally did) so they see my chart and see   … OH YOU ARE OLD  … so you must HAVE  … A, B, C, D, E, and F disease  … and prescribe accordingly  for  high BP, Diabetes, Gout, GERT, cancer, stroke, fast pulse, UTI, and many other symptoms,   as they could not understand how my 9 or 10 symptoms could be ONLY ONE DISEASE …. Myasthenia Gravis.

My only slight issue, was after I had the 3rd one  … I felt no pain that day  … so when I went to bed, on my right side as usual, late that night   …. I landed on my right bicep  … and then finally felt the sore arm from the shot,  that had not fazed me at all that day.

Now that the new and IMPROVED  MODERNA BOOSTER SHOT is just out  … I need to get that  .. but fewer places are offering it, including my doctor (who did them before), the city, and my FRYS pharmacy, that has other shots but not MODERNA  … so am still looking but feel safe with that again.  EVERYONE is without MASKS and MOSHING again  … so I must be SAFE………..

[Jonathan A]

On Black Friday this year   … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search.  I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine.  My new family doctor was scheduling his patients for WEDNESDAY  appointment MODERNA SHOTS and I got my first two in April and May of 2021.

Then on  12-28-2021,  I got my first MODERNA booster in a TEMPE, Arizona CITY WIDE program, where they offer shots  at two different schools in the morning one day each week.  I had no problems or bad reactions, at all, even though the doctors, who were not able to diagnose my MG, had been still prescribing 5 blood thinners, anti- clotters, and a dangerous BETA BLOCKER and STATIN  …  for an MG patients.  Usual problem.  No doctor could diagnose my MG (a hospital nurse finally did) so they see my chart and see   … OH YOU ARE OLD  … so you must HAVE  … A, B, C, D, E, and F disease  … and prescribe accordingly  for  high BP, Diabetes, Gout, GERT, cancer, stroke, fast pulse, UTI, and many other symptoms,   as they could not understand how my 9 or 10 symptoms could be ONLY ONE DISEASE …. Myasthenia Gravis.

My only slight issue, was after I had the 3rd one  … I felt no pain that day  … so when I went to bed, on my right side as usual, late that night   …. I landed on my right bicep  … and then finally felt the sore arm from the shot,  that had not fazed me at all that day.

Now that the new and IMPROVED  MODERNA BOOSTER SHOT is just out  … I need to get that  .. but fewer places are offering it, including my doctor (who did them before), the city, and my FRYS pharmacy, that has other shots but not MODERNA  … so am still looking but feel safe with that again.  EVERYONE is without MASKS and MOSHING again  … so I must be SAFE>

[Jonathan A]

It is so great that you are alive and “ME AGAIN” … as I keep saying to myself. I guess is so TRUE about MG being a snowflake disease. Everyone’s issues and meds are so different. I am sure the horses are happy that you are back in service. I turned 72 in June 2023 … and PREDNISONE almost did me in. They gave me doses of PREDNISONE, while other doctors were dumping STATINS in me … so I got MEDICALLY INDUCED DIABETES II suddenly … and they were shooting me up at least twice a day with LANTUS products. But once they tapered and KILLED PREDNISONE … the new doctor tapered and killed all those shots … so I am mainly on CELLCEPT and MESTINON to stay alive. My cousins homestead in Winthrop Iowa … and they started with heavy DRAFT HORSES for plowing …. before they got tractors … so RONALD COLLINS had one of his DRAFTS called DIAMOND studding out all over the county. Now the DRAFTS have all passed away … so they are into riding horses for parades and leisure exercise … including one called TOM COLLINS. SO THANKS FOR YOUR VET SERVICES TO YOUR EQUINE FRIENDS …..

[Jonathan A]

Your stomach issues might be connected to your MG and MEDS.   When I landed in the first hospital, for some screwy reason, they started dumping the steroid PREDNISONE in me  .. and I was still undiagnosed about having MG.

My two RARE DISEASE RESEARCH FOUNDATION REGISTRIES  (ALL-STRIPES  and PICNIC HEALTH)  … finally recover all my hospital papers.   I was given over 90 meds including the sedatives MORPHINE and FENTANYL.  The papers said I was also given PANTOPRAZOLENE (sp?)   … and it stated that ….  that was being dumped in me, as a prophylaxis (sp?) because  PREDNISONE and their other meds could make me get stomach issues and GERD,  which I never ever had.

My new doctors say be  VERY CAREFUL, as you can get bad MED interactions  … such as for MG patients, the sleep aid MELATONIN can be dangerous if you are on CELLCEPT or other IMMUNO-SUPPRESSANT drugs  … as MELATONIN tries to revive an immune system that CELLCEPT is trying to suppress.