[David S]

Hi Jack –

All of my medical needs are provided by the VA and includes eyeglasses and hearing aids.

We moved to Houston, primarally, due to the medical support here.

I also have a PCP under Medicare. He is aware of what is going on and is ready to refer me to a MG specialist not with the VA. My VA Neuro primarally treats ALS and MG.

My tour in Viet Nam and ear damage makes me a Disabled Veteran and helped with my Priority level.

You might consider contacting the VA to determine eligibility. This won’t help you today or even this month but, if available, … it doesn’t hurt to look into it. You might be surprised.

Scott

[Amy Cessina]

I scheduled my booster for November 1. I had to wait because my son brought home a viral illness from high school and spread it around the house including me. Funny everyone wore mask etc inside but it didn’t matter we are all sick. It’s Not Covid we got tested. But kids back in school after a year and a half means mega spread of viral illnesses.  Hopefully my booster will go well and then two weeks later I’m getting flu shot.

David S your post caught my attention. I think Vietnam vets have higher incidence of  MG due to chemical exposures over there. Did any neurologist ever ask you about that? Just curious. I had chemical exposure where I grew up. Soil was contaminated years later they dug up all the leaky barrels of chemicals and cleaned it up but too late for those of us who played in that soil as children.

[Rich Michaud]

Amy, that is interesting. Maybe there should be a new thread on this subject. I have always been wondering about chemical exposure and MG.  I was diagnosed with ocular MG shortly after I did some fiberglass work on my boat. (almost 20 years ago). A few years later, I did fiberglass work on another boat and shortly after, I was diagnosed with generalized MG. Both times I probably inhaled fiberglass dust and vapors of acetone. I had fiberglass dust all over my body. Rich

[David S]

Hi Amy –

Not to Hijack this thread –

There does not seem to be any connection that the VA recognizes between chemical exposure in VietNam and MG.  Only recently has the VA approved Parkinson’s as coming from toxic exposure in VietNam.

When I was first aware of MG before I was diagnosed, I started looking into this and could never find a connection.  Lots of questions but no connection.  I even researched settled law suits that tried to prove that there is a connection.  Unfortunately none of the suits settled could establish that connection.  Maybe some day.

Regarding Riches comment – Lord only knows how this thing got into us and from where.  🙂

Scott

 

[Carole Lawrence]

Thank you Scott. I have often wondered about that myself re a chemical exposure possibly causing MG. When I was walking in my high school grounds in the late 1950’s here in Australia, a crop dusting plane that had become disoriented accidentally sprayed me with DDT! I was covered in it from head to toe! I later asked my Neurologist when he asked me had anything strange happen to me when I was growing up and at what age did I first notice MG symptoms. When I told him that I had been sprayed with DDT at 15 years old and that was about when I first noticed strange symptoms that had no explanation – such as suddenly collapsing after a foot race and being unable move or stand up or to see properly due to double vision, he immediately dismissed it as not having anything at all to do with me developing MG. At the same time that I was sprayed with DDT so were other locals in my small country town and 9 months later three women gave birth to grotesquely deformed babies who died! The Government when contacted about the 3 birth deformities 9 months after the 3 mothers had been accidentally sprayed with DDT said it was just a coincidence! I really do hope that more research goes into this possibility of exposure to chemicals being at least one cause of MG.

 

[paul spychalski]

Citation Nr: 1147153        
Decision Date: 12/28/11    Archive Date: 01/09/12

DOCKET NO.  05-33 541     )     DATE
  )
  )

On appeal from the
Department of Veterans Affairs Regional Office in Waco, Texas


THE ISSUE

Entitlement to service connection for myasthenia gravis.  


REPRESENTATION

Veteran represented by:     Texas Veterans Commission


WITNESSES AT HEARING ON APPEAL

The Veteran and his spouse


ATTORNEY FOR THE BOARD

S. Dale, Associate Counsel


INTRODUCTION

The Veteran served on active duty from June 1966 to May 1968.  

[Amy Cessina]

<p style=”text-align: left;”>We should start a new thread on this topic. I’ve thought chemical exposures can trigger autoimmune. Agent orange exposure in Vietnam vets  I thought maybe was trigger. My exposure was heavy metal and I know that can trigger autoimmune. I have two autoimmune conditions.</p>

[Bill Johnson]

Received the two (2) Moderna shots in early 2021, then received my usual rituximab infusion in May (get Rituxan every 6 months).  Unfortunately, the rituximab inhibited the creation of any antibodies (confirmed by serum antibody test).  Unfortunately, I contracted COVID-19 in the fall, but was fortunate enough to have started monoclonal antibody treatment very early in the course of the disease.  I’m not sure if I would be writing this if I didn’t get the monoclonal antibodies.  Anyway, my physician says that a booster would be a waste of a shot since I will receive Rituxan in a couple of weeks.

[Douglas F Young]

Its reassuring that the MAB helped you even with your immunosuppression.

I tweaked my immunosuppressants before my booster and finally got some positive results. Nothing at all from the first two shots.

[Dick]

Does anyone know yet, if you “tweak” your immunosuppresants and then get the booster do the good positive numbers stay with you or go away once you return to the immunosuppressants?

[Douglas F Young]

Good question, and not likely to be answered soon. We don’t even know for sure how well the antibody numbers correlate to immunity. The antibodies are waiting around to notify the immune system that known pathogens have been detected, but maybe with immunosuppressed people there’s no one waiting to do anything with that information.

[Michael Van Alstyne]

Received 3rd Pfizer shot Nov. 10. I don’t think the MG was affected, but now on the 12th I feel lethargic. Just have no interest in doing anything -could be the weather or old age. Flu shot is next, but have to wait to schedule between IVIG treatments.BTW my arm was really sore after the shot for a couple of days, but I think the nurse put the needle in too high.

[Dick]

Got my 1st Moderna shot on February 26th, 2nd shot on March 26th with only a slightly sore arm on both. No other issues with either of them. On August 15th I got my booster and had a very sore arm and the next day had a slight fever. Then nothing after that. I have been on mycophenolate 1000mg AM and 1000mg PM only for over 2 years, and have heard of others who have been on a low dose of prednisone who have been tested and had high antibody results. Has anyone taken the antibody test who is/was on mycophenolate, at the time, and what were their results like?

[Douglas F Young]

I had Pfizer shots in Jan-Feb this year. Antibody tests came back negative. I was on 2000mg of mycophenolate at the time. I stopped the mycophenolate for two weeks before the booster and got positive results. I am also on 10mg prednisone which I left alone.

[Bill Wheeler]

Third Pfizer shot, no problems, also received quadravalent high dose Flu shot, felt a bit “off” for a day or so. Very thankful.

[Amy Cessina]

I finally had my booster after cvs cancelling on me twice. I finally went to my health department clinic. I’m having a few minor side effects the next day but will keep an eye out for anything bad. Drank all the water like I was asked to. Not sure if it did anything but figured it couldn’t hurt.

[Deleted User]

Hi, my mother (72) developed MG a few days after the 2nd dose of Moderna in April 2020. Omg, 4 months she hasn’t been able to eat, swallow and to speak properly + diplopia. Also, she permanently lost vision in one eye (after the 1st doze) and she still feel a some sort of dizziness. No one knew what was wrong with her. We’ve visited more than 10 doctors and spent €1000. Finally, anti Achr was 8 (eight) and then MG has been confirmed in September 2020. Now she is afraid to receive the 3rd dose. Daily medicine: Mestinon 3x60mg and 30mg of Prednisone. Still feels very tired/weak but she can eat properly. Diplopia is resolved but one eye is still very blurry. Other family members including me were vaccinated 3x with Pfizer without any problems (so far).

[Ms.Will]

I was diagnosed with MG about four years ago.  I was on Muran for two years and have been on Mestinon the whole time.  I finally received the ok from my doctors in the fall that getting the vaccine and possible side effects were a better issue than not having a vaccine and catching COVID.

I received my first Moderna dose in September and only had a sore arm for a few days.  My second one gave me aches,  chills, and a headache.  I was very fatigued. This lasted for a day.

My 3 dose, in anticipation of feeling like crud, surprised me and it wasn’t as severe as the second.

I am glad my doctors delayed giving me a decision right away because I wasn’t comfortable in getting it since there wasnt enough literature for the effects of MG patients in the beginning.

I think the side effects really depend on how MG processes in the individual.

[Sandra Davis]

I aam treated with plasma exchanges, only right now. I was doing well enough to start aquatherapy, until the vaccine. I had 2 doses of Moderna, and the booster, with no pain,
but now have severe dysphagia and double vision. However, have been spared the covid illness. I guess it’s a trade-off. I would do it again, though.

[Celeste M Matthews]

I had a total of 5 shots. The very first Pfizer that came out, 2 doses. Later when they said we need boosters, 2 doses. Of course spaced out like it was supposed to be. Then some time in October, I had the newfangled fancy “bivalent” Pfizer shot. No problems at all.

However, my 35 year old son, who is as healthy as a horse, had numerous vaccines. He had the bivalent shot a week after I did. It made him feel like crap.

And guess what? He caught Covid. He has been sick for 2 weeks. He is finally testing negative.

I am done with these Covid shots until somebody can explain why they don’t work.

I do get flu shots every year because I always get flu if I don’t.

[Deleted User]

Hi Celeste, Covid shots can’t protect you from getting Covid. They protect from serious illness. Covid is more invasive than flu. The virus that causes COVID-19 is generally more contagious than flu viruses. Small COVID-19 particles may linger in the air longer than the flu. I got covid shots with boosters without side effects and my mom developed myasthenia after 2nd shot. But I’m still pro vaccine 🙂 My mom probably had dormant myasthenia for years. Alan

[David S]

Got my 5th shot yesterday with the latest Flu shot.  One in each arm.  Also got the Prevnar shot on Wednesday.  I should now be current.

Scott

[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………..

[Yasamin]

I had three shots of Astrazeneca vaccin  and each time I had severe side effects. In fact working as a dentist I was obliged to receive the vaccines.

now my neurologist insists  that I get my 4th booster shot and I am wondering how it would be affecting me.

[Charles Karcher]

I received my sixth Covid shot this week.  I did not even have a sore arm this time.

 

[Mama]

I did not do any of the

COVID-19 shots. I have not done any vaccines, including the flu vaccine, for over twenty years. It is a personal decision after some research. We each have to decide what is best for our body.

[Debbie sandwra]

Covid vaccine and booster triggered me so bad that never again. And the Dtap that I got when my grandson was born same thing. So no more vaccines for me.

[Pearl Moffett]

Hi there-

I took all Phizer vacs and a few boosters over the years, including the recent one. I’ve fortunately not had any issues at all. I’ve had my Oncologist suggest not to do the latest booster, but I had just had it per my Neurologist. I have done well. I hope this helps!