H1N1 - How many had the VIRUS before symptoms of MG?
 

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?????:confused: :eek:

don't know WHAT virus I had, but I was very ill.....
 

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:hug:

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

Adverse Reactions
 

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! :sunchair:– Europe calling :rain: ....(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. :Dunno:

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


Anacrusis

:D 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!!!! :rain::Demonstration:

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

There seems to be a lot of correlation with Thyroid issues too. I had a tumor on my thyroid removed 30 years ago. They removed half the thyroid and 2 parathyroid glands. I have thyroid test done periodically. The results are up and down but never any antibodies are detected. I still think it probably raised my risk for MG.

kathie

Vaccine, flu
 

For whatever it is worth...I had guillain barre very serious paralyzed neck ,down for 5 months in 1984. I was asked at the time if I had had flu or flu shot and I had not back then and ever since I have never accepted it. Now no shot, no flu and I have MG, go figure!

I do have hashimotos hypothyroid dx 2006

Hello PRgirl
 

There is a connection to virus, and some dang disease following it. I got a virus of some horrible nature when I was 29. After 20 or so doctors, wondering why my hair was falling out in clumps, I went to Mayo clinic. Auto immune diseases have this connetion. I now have 4 different auto immune problems. fun fun fun. In my case my t @ B lymphosytes are not in sink, and attack me as a forien object. I wish you all the best. I am sorry you have MG ginnie:hug:

It is possible that all autoimmune diseases are caused by viruses.
I can see two ways this could happen. These are my ideas only. As far as I know, there is no proof or evidence that they are true.

1. The virus invades the DNA of the person's immune system cells and makes them go haywire.

2. The virus attacks other tissues (in our case the neuromuscular junction) and in the immune system's efforts to rescue us, it accidentally starts attacking our own cells.

Kinda like a dog that is killing the fox in the hen house and then develops a taste for chicken.

Once a dog starts to eat chickens, it is hard to break him of the habit.

Hi South blues
 

I know you are spot on. It was explained to me like that from Mayo clinic. They didn't even identify the virus, but did see the effects on my immune system. thanks. ginnie:hug:

Wow. Maybe I should get a job at Mayo Clinic in their "thinking" department. Lol.

Ginnie, I am curious as to what other autoimmune diagnosis you have with MG. I have asthma, eczema, psoriasis. I am being evaluated for psoriatic arthristis and MG. Also I have RSD that has been in remission for 15 years. Now I am reading that they think RSD is autoimmune too. I had a tumor removed from my thyroid 30 years ago, they left half my thyroid. They removed 2 parathyroids too. My TSH has been up and down for years. I often wondered if I had Hashimoto's thyroiditis. They only tested me for thyroid antibodies once and they were negative.

I keep wondering if the RSD, thyroid and MG are all related. They have very similar symptoms.

kathie

I agree
 

I agree with all of you. Maybe you had a different virus. I know I had the swine flu H1N1 because I had all the symptoms and it was when was a pandemic here. I was lucky that when I made it to the hospital I didnt have to wait cause I would just passed out.

I saw a video from a Dr. in Illinois which also said that is not genetic, is just like what we know. My sis that is a neurologist has Lupus and she got it after getting pregnant from her last son. She thinks am just another victim of Lupus but I always come negative...

You all have mentioned medicines I never heard, I only take mestinon....for what is the other meds? Also lots of the medicines that you all mention that are bloquers for neurological system, are the ones I take daily.

What about weight? Are you all been able to control your weight or been in prednisone its been the killer? :)

Hi cait/ fellow immune plagued folks
 

Virus started, then alopecia universalis, asthma, arthritis (severe) barretts esophagus (yes connected) degenerative joint disease, degenerative disk disease, RSD or PN and a partridge in a pear tree. fun fun fun. I don't have MG. but have been tested for that as well as several biopies of thyroid. Have upper GI on monday, biopsy as barrretts is pre-cancer. All this stuff is related. No doubt in my mind, or in any of my doctors minds either. I was in a trial study for 10 years, with an auto-immunosupressant called DNCB. I was healthy for the trial. soon as I quit, well it all came back and with a vengance. Had TypeII Asian flu, 2003 took 8 weeks to kick, now that is not normal....got it on a cruise, no surprise there, that is the last floating petri dish I go on!. I am sorry we all suffer from these things. I have a feeling after reading Silent Spring by Rachael Carson, that contaminants in the enviromnent, kicked the whole shebang off. The book is worth reading to those who suffer from auto immune diseases. I wish all of you the very best, and I will keep us in my prayers. ginnie:hug::grouphug::(

I am sorry you have gone through all that and hope you are feeling better soon. I know how painful the RSD can be and how disruptive to one life. When I started with the MG symptoms, I thought it was the RSD returning. It does feel similar but at the same time different. I too pray that they find a better way not just to treat but to cure and prevent all these auto immune diseases that are taking control of our lives. The onset has a lot of common threads.
Best wishes, kaithie
p.s. Cait is Irish for Kate

Hi Cait
 

Did you ever have epstein Barr Virus? There is a connection to most auto immune problems with that too. I had it for 5 months in 4th grade. I am sure all the stuff is connected. ginnie

I was never diagnosed with Mononucleosis. So unless it was a very mild case, I do not think so.

Cait

I had mono when I was 15 years old. I actually almost died from it. I was in the hospital for a week and at home on bed rest for 6 more weeks. My liver and my spleen enlarged tremendously and the doctors feared that my spleen would rupture. I never thought about that it might be related. That has been 40 years ago. I barely remember 40 years ago...........

Ginnie
You said you were healthy for 10 yrs in trial...what happened? When did it end and how Come if you responded so well they didnt keep you on it? I would never have thout you could participate in trial with positive outcome and then they cut you off!

Is there relation between Epstein barre and guillain barre virus?

About the trials
 

One of the reasons why I quit the trial is because it was so hard on me. It is a form of chemo, and while the effects of the treatment only lasts about 4 or 5 days, you are kind of in bed with it. It was horrible. I wanted more than anything to try to get on with life. I had started my business and it took off, and my father needed me with his thoat cancer. Then I had my mother to care for as well. I am an only child. I moved from MO. to Fla. and this treatment was not available here. My mom wanted out of the cold chicago area, and I was sick of the whole ordeal. I also had two children to raise. I did the trail from about 1983-1993, and moved down here in 95'.
There were never any guarantees with the trails. I did it for research, for those that follow, including my own children, as there is a genetic component. My son, had the epstein Barr Virus badly too, and as a young man in his mid 30's he had thyroid cancer. I guess the more they learn about auto immune problems, the better it will go down the line. Monal clonal antibiodies, which they take your antibiodies out of the spinal fluid, inject them into mice, let them produce the proper antibiodies, and re-inject back into you, is what they were doing "after me." The diseases like cancers of the blood, were going to be done first, and the diseases, that kill are on the top of the list. My stuff only makes you sick, but not lethal so to speak. The DNCB which is a word about 30 letters long, I can dig up in my records. I never could pronounce the word. The trial was without cost to me, but working was hard to do while ill. I had no health insurance because of this trail and pre existing conditions. Set me up for failure financillly. Had to work and get on with life. It is a huge committment, to do all your life. ginnie:hug:

Hi steph
 

I would not doubt that Epstein and Gullain are in some way connected. I did a tremendous amount of research while at University Medical Center. I had access to the student doctors library. I kept up with the research for a long time, to try and figure out for myself, what was up with me. It helped me to cope being involved and not passive. ginnie

Although I was only recently diagnosed with generalized MG, the symptoms started following a bout of the H1N1 during the fall of '09. My doctor feels that is what started it.

Here's my story. I did not have a flu but a cold that held on for a month and a half and was over everything but a nagging cough. When I went in t0 he doc in a box my oxygen level was at near pneumonia level so I was giving antibiotics and a flu shot. 2 weeks later I developed a droopy eye and MG was diagnosed 2 weeks after that.:(

I was hospitalized with a serious viral infection in 2005. I had mostly neurological symptoms and was diagnosed with vestibular neuronitis with encephalopathy. I was having debilitating dizziness and vomiting. I also lost some hearing. I had many tests to determine the viral cause but nothing was found. At that time, it was noted that I had ptosis and leg weakness. I went home using a walker and had to relearn balance.
My current Neuro is sure that I was manifesting MG symptoms at that time but it was overlooked. He also thinks I had signs of MG before the virus but the stress of the virus really brought it out. He thinks I was put in remission by the massive doses of IV steroids I received (10,000 MG a day for 5 days) Many years before, I had reacted badly to local anesthetic several times. When I could not move or lift my head after a procedure everyone thought I was crazy.
I think the MG was there before my virus but was brought out by stress and fatigue of the hospitalization
Sandy

On virus and auto immune problems
 

I had the flu which did put me in the hospital. Shortly after that, I received my first auto immune problem. Have no doubt that the flu and meds. given and considering how sick I was, contributed to auto immune conditions. ginnie:grouphug: