Since I started researching for the Myasthenia Gravis, I have read about 2 other people that started symptoms after the VIRUS. I am wondering how many other are out there that had the SWINE FLU H1N1 then started Myasthenia Gravis symptoms?????

Hubby and I were in Belize (in the most beautiful place in the world, I think)...don't knw what I caught - actually WE caught, but I have never hurt tha bad before....fevers abve 102, eye pain, nausea, etc.........after a week I noticed I had problems with ,y vision ( was 20/10 before). Within 6 months I was dx'ed, in ICU and had a thymectomy. Granted, looking back I was always, always sick with SOMETHING and had seen my PCP fr years regarding lack of energy, but that bug was the straw that brke the camels back, so to speak..........it was awful. Sadly, I did not go to the dr. ust stayed in bed, so I will never know what it was........Hope this helps! Erin Hermes

I had the H1N1 in June 2009, and never had MG symptoms before that. I think my MG symptoms started about 2 years ago but got a lot worse after surgery 6 months ago

Welcome to the group,
kathie

Cait24 and erinhermes, The symptoms from the swine flu H1N1 were fever. body ache, cough and cough and later one stomache sick. For some like me I ended with pneumonia, but not necessary so strong for others. If this was in the summer 2009 that was when the swine flu was the active virus every where. I asked because seems like it is related. Tho far is a few people which we were sick with the MG and like me with Pulmonary Fibrosis too. Would be good to find out how many are with the same disease before the MG, so doctors can do some research.

thank you and read the symptoms or look online and let me know. PRgirl53

I was with the Canadian Military in 2009, and was ordered to get the H1N1 shot (AREPANRIX by GSK GlaxoSmithKline). *I had an adverse reaction to the vaccine which included PERMANENT neurological, cardiovascular, gastrointestinal, and respiratory symptoms. *It's difficult to believe but I now have dizziness, vertigo, irregular heart rythyms, shortness of breath, muscle weakness and pain, and numbness moving up my body, to name but a few of the serious symptoms. *I went from special forces fit to that of a 70 year old in a matter of days. *Please choose wisely if you do plan to have your next flu shot or vaccination. *You may also ask your doctor and other Heath care workers if they will be getting these shots. *My doctor flat out said "no way"

I get the flu shot every year. On those few years that I don't get the shot, I get the flu. I am in a high exposure occupation because I teach large numbers of students, most of which work in hospitals and other health care facilities. When I have had the flu, I have become deathly ill. I almost died from complications of flu. I will be getting my flu shot this week. I think that we need to look at risk versus benefit with any drug. I have never had an adverse reaction to the vaccine and in my case, there is great benefit.

I just read the CDC's report on the association with swine flu vaccines in 1976 and neurological disorders. This vaccine caused an increase in the incidence of Guillain Barre by 1 per 100,000 people. That was an older vaccine. The CDC is recommending vaccination. I am in a high risk environment.

I'm still getting the shot. If I drop over dead, well everybody can say "I told you so".

http://www.cdc.gov/flu/protect/vacci...llainbarre.htm

Hello Puerto Rico! – Europe calling ....(Want to swap?!)

I think the answers you have so far are very interesting…….

Including the unidentified virus!....

I was tested positive for EBV before getting myasthenic symptoms and also had some similar symptoms as described above starting in 2008. My virus may not have been an unidentified one but it certainly was a never ending one! (Fever & severe eye pain over 2 months etc etc.) EBV connection to MG is debatable but what is interesting to me is that the onset, slow tempo and severity of my own progressive myasthenic weakness has closely mimicked the pattern of the original virus. Whether the virus transformed into myasthenia as a result I will never know.

Anyhow, good luck with finding more H1N1´ers – I look forward to reading all the info you collect!


Anacrusis

I thank you all for taking the time to read and write about the H1N1 maybe related to Myasthenia Gravis? That's the question. All of you including Gord that had the shot, had a similar situation. Please go back, to the stages you had and think all the symptoms you had. My neurologist told me about a patient DOCTOR that kept promoting the H1N1 SHOT, and now she is just like me...had all the same symptoms. Now my symptoms have a name MYASTHENIA GRAVIS. Gord, you said you felt like an 80 year old man or 70? The same here, I can hardly get up from my own bed. I watched some videos from a research place I think is in Illinois, and they said MG isnt genetic. Is caused by something that triggers the disease.

So far from the groups I am is over 4 people that started MG after having the Swine Flu. I see that the clue year for most was 2009, was the PANDEMIC year of the H1N1. I also read that because you had it once cant come back? NOPE, is false...YOU can get a different kind of virus, maybe weaker maybe stronger.

Please look in your symptoms after the "unknown" or H1N1 virus and see if we are talking the same language. I am trying to find the relation of both. And the more people we can find with the story, maybe we can achieve some research and study about both, and get some answers! Thank you all for your responds, for me is very important because I know I started the MG exactly after the swine flu while I was in the hospital with the severe pneumonia!!!!

It's common for MG to either start, or get suddenly worse, when the body is fighting an infection of any kind. I don't know the mechanism, but it makes sense to me that when the immune system is challenged, it can over-respond. Here's another example: after a woman has a baby, her immune system goes into high gear to prevent infection. That's a common time for a woman to get an autoimmune thyroid disease like Graves (that's what happened to me).

Here's my whole MG story. In the spring of 2009 I had a relapse of my Graves disease. I took PTU (propylthiouracil), as I have on and off for 15 years. That summer, I started sleeping a lot more than usual, but otherwise I felt fine. Then in October of 2009, my five youngest children got H1N1 (before the shot was available). I took care of them for three weeks. At the end of those three weeks, I wasn't feverish, but I had deep body aches for a few days, and then got better. I felt like I was catching the flu, but my body was successfully fighting it off. Then one evening I was standing talking to my husband when I suddenly felt extremely tired. I put my arms around him, but collapsed slowly to the floor anyway. I didn't faint or get dizzy or lose my balance. I didn't understand what had happened. Now I do: my legs simply weren't strong enough to continue to support my weight.

In the next few weeks, I noticed I would lose my balance slightly while walking, and have to take a step to the side to catch myself, two or three times a day. Then I had more of those collapsing incidents, and started walking in a very wobbly way, because of the weakness in my sides. Then I had trouble with my arms, and sometimes with swallowing, and a little eye strain, and neck weakness. After about six months I stopped getting worse, and though my symptoms move around, I don't seem to be declining. I am seronegative (diagnosed by SFEMG). I'm on Imuran.

Abby