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Old 09-19-2012, 05:43 PM #11
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Originally Posted by Stellatum View Post
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
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Old 09-19-2012, 07:51 PM #12
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Ooo 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

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Old 09-20-2012, 07:17 AM #13
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Default 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
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Old 09-20-2012, 09:03 AM #14
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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.
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Old 09-20-2012, 11:51 AM #15
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Default 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
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Old 09-20-2012, 05:32 PM #16
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Wow. Maybe I should get a job at Mayo Clinic in their "thinking" department. Lol.
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Old 09-20-2012, 07:03 PM #17
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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
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
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Old 09-21-2012, 12:17 PM #18
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Default 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?
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Old 09-21-2012, 02:36 PM #19
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Heart 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
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Old 09-21-2012, 07:10 PM #20
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Originally Posted by ginnie View Post
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
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
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