MG - who's idea was this?
 

I'm a 2+ year member of the distinguished and exclusive group of MG folks. I've never read or gotten any info. from my Dr. about theories on the causes of MG. My MG started suddenly within a week of the first flu shot of my life (age 54). Mr Dr. discounts this idea - but no one has ever offered any better theory. I assume most of my fellow MG-ist must have entertained theories themselves - any thoughts?

Just adding my experience...This is the first year I have ever had the Flu shot also, and now diagnosed with MG - I was diagnosed March 26 of this year. I have though, had symptoms for A LOT LONGER than before my flu shot...however, it seems that in the last 6 -12 months things have gotten VERY BAD and I have pushed for a diagnosis. My test results for the blood test (sorry newbie and don't know the appropriate names, but the one testing the antibodies in blood...that aren't supposed to be there unless you have MG....) well my test results were 234.98....anything GREATER THAN 0.5 is a positive for MG....so not sure what is up with my numbers!!!!! My Neuro has never seen/heard of numbers so high....in fact, even though I live in a suburb of Chicago, I am his only Myasthenia Gravis patients...he has 2 patients with Ocular Myathenia....but no others with Myasthenia Gravis....OH BOY aren't I the lucky one....

So that is all I can say on this topic....I will learn more as I stick around.

Thank you
Darci from Chicago

I got MG after taking a thyroid-suppressant drug for Graves' disease. There are a few of us on this list who have that story. We got Graves' disease after giving birth.

But I got my first noticeable symptoms of MG after five of my kids had H1N1 (this was before the immunization was available). I took care of them for a few weeks and never caught it myself. At one point I felt like I was starting to get it--I had deep body aches for a few days, and then they went away. It was then that the symptoms started (I collapsed, and afterwards started losing my balance occasionally while walking).

My doctor thinks it's most likely that I had mild symptoms for months before that, without noticing them, which makes sense to me (looking back, I remember I was suddenly needing much more sleep). I've since noticed that whenever I am fighting an illness, like a cold or sore throat, my MG gets much worse. I think that these illnesses must increase the activity of the immune system in general--which increases the MG antibodies, too. I'm just guessing.

So I'm saying that while it's possible the flu shot gave you MG, you should also consider the possibility that you had it already, and the flu shot acted as a symptom-trigger.

Abby

Vaccines can be triggers for autoimmune disease. Dr. Blaylock MD has several videos on this subject:

http://www.youtube.com/watch?v=--nWrqIspnQ

There are 4 parts to this subject on YouTube. Part 2 specifically discusses adjuvants in the vaccines that can trigger autoimmune disease.

My MG was triggered by an extremely stressful period of my life. Thinking back before I was diagnosed the MG symptoms were there for years only in mild form as some occasional muscle weakness in my legs. It took the stress to trigger the general MG I have now. I think in most of us it is there it just needs a trigger to bring it out be it a vaccine or some other event to bring it out. Just my thought anyway. Now if I can just make it go away.
Al

My onset started before I ever realized I was sick. About a year before I knew I was sick, at work as a bartender, I;

Started spilling and knocking things over.

Found myself having a harder time comunicating with customers. (speach)

Lifting the same items started to become more difficult even though I was exersizing regulary and was in really good shape for a 65 year old.

I have no idea what triggered my MG.

I have had flu shots every year since I can remember and still do and when i was Dx. with MG my Neuro told me to get the shots if my GP and lung Dr. wanted me to. Not that it matters but I would be curious to know if something actually triggered my MG.

Tony

Thanks to all for your quick replays. This is my first post and you all are the first persons that I have communicated with regarding MG. I'm so emotional right now I feel like crying. Picture a 55 year old guy with an eye patch trying to be a tough guy and hold back tears.:rolleyes:

Thank you so much for your responses. It's so important to know others are out there - sometimes this feels so crazy to experience alone.

Sounds almost like a match to me - only I'm a 62 year old women with an eye patch! I know exactly when my mg came on and it was very quick. I was living in central Georgia and driving to Tenn on the weekends to clear up some lose ends for my old boss. I was fine driving to Chatt on Friday, but the drive back on Sunday was a nightmare. I couldn't hold my eyes open and had a difficult time holding my head erect. A 3 hour drive took almost 7 hours because I had to keep stopping to rest my eyes and neck. It took 6 months after that for a diagnosis while the symptoms just kept getting worse. I was so relieved to get a diagnosis, I cried for joy. (Of course, once I understood mg, my joy was definitely downgraded!) But, at least I knew what was wrong.

Don't feel alone! I'm 71 and wore a patch for a year and didn't drive. Plus hardly a day passes that I don't cry when I'm alone. Hang in there.
Mike

I am 30 years old and have to wear an eye patch, I was dx 4 months ago and was so weak I fell down the stairs with my 8 month old baby! I was dx with Graves disease, and the mg progressed VERY fast 2 weeks later I could barley walk at all. So did something trigger the mg??? Or just a coincidence?? Who knows!!!!

Ok, folks STOP wearing the eye-patch!! I went to a neuro-opthalmologist and his tech fixed a pair of glasses for me with SCOTCH TAPE -- YES, SCOTCH TAPE!!! Here's what you do. Figure out WHICH eye is dominant. My right eye is dominant. So, he put the FUZZY-looking (NOT the clear kind) of Scotch tape over the lens of my left eye (non-dominant). IF you do NOT yet NEED glasses, you could get a pair of those el-cheapo kind at a dollar store and just KNOCK out the lens on the side that you will need to LOOK through -- and put tape on the side you need to cover. I'm telling you, the scotch tape makes the glass JUST blurry enough that you won't be able to focus and it is amazing. When people see me, now -- I almost look "normal". They can see the shape of my eye through the "semi-transparent" tape -- and it takes a second or two for them to figure out something is different. It is not NEARLY as distracting as an eye-patch!! And it lets LIGHT into your eye!! :D

How do you pretend you're a pirate with scotch tape instead of a cool eye-patch? :cool:

HAHAHAHAHAHAHA!!! Great MG attitude!!!!!

Of course, we girls have to think about our "beauty" and trying to "fit in" -- LOL!!

Oh I played a pirate for a year. The kids really stared at me in the stores.
Mike

Thank you! Thank you! Thank you! I just made my first trip out using the scotch tape instead of a patch and it worked! Much easier than a patch and my glasses sat straight on my nose. Yea!

Yay!! I thought my doc and his tech were BLOOMING GENIUSES!!:hug:

I am 57 and have been diagnosed for 2 1/2years. Can I ask why so many are wearing eye patches? Is it due to double vision or droopy eyelid? Has anyone gotten or heard of eyeglass crutches? I'm having a terrible time with my eyes. Thanks.

An eye patch eliminates double vision but it impairs your depth perception. You can drive but definitely you have to be a aware of that.

My vision is not bad enough to require glasses for driving. The optometrist did not think I needed glasses because the prescription was so minimal. I insisted.

I did the same thing Jana did but I used a black marker to paint the tape but maybe I did not have to paint it. I don't know now because my DV is gone but the little bit of improvement in the one eye eliminated the blurry vision in that one eye.

I still wear the glasses without the covering when I am driving because I still have a little bit of blurry vision and using them makes driving much easier and eliminates headaches.

Tony

For me, it is double vision - I can't drive or read without some type of eye patch. I see 2 clear images, one above and to the right of the other. My right eye muscles are the ones affected, the ones that hold the eyeball down in a alignment with the left eye.

I'm not the only one
 

I had my flu shot on October 26th, and my first ptosis symptom appeared on October 28th! I was at an opthamologist by the next week and was diagnosed with MG within another week with positive blood test. Got to a neurologist, he ordered a cat scan that showed a hyperplastic thymus. Told me it needed to come out, so we decided to do it before the end of the year (for insurance reasons). Started plasma exchange on Dec 15, had transternal thymectomy on Dec 20 and went home on Christmas Day. (could have gone home on the 23rd but developed arrythmias and had to stay). My thymus ended up being 4 1/2" by 4 1/2" but no cancer.

My point is (and I do have one), I am so glad to read that someone else "developed" MG after a flu shot. Well, not glad that they got it too, but you know what I mean. Each doctor has told me that the flu shot had nothing to do with it........I'll always wonder if and when the MG would have appeared had I not had the flu shot.

Wow, I thought I was the only one! Mine started two weeks after a flu shot. Actually, the company that I received the flu shot from acknowledged MG as a side effect from their Standard Dose shots.

You should look into the Vaccine Compensation program. Since it was the flu shot that caused your MG you can get compensation for your medical costs.