[christa]

This comment that Annie made really has me curious.

"In women, for example, estrogen fluctuations can have an adverse effect on MG. There really is no way to predict how your MG will progress. Sorry, there are no easy answers with autoimmune diseases. Just take the best care of yourself that you can."

I have noticed a MONUMENTAL connection between my MG symptoms and my menstrual cycle. I've mentioned it to both my neurologists, and endocrinologist. My symptoms flare dramatically about 5 days prior to my cycle as well as the week of... which is two weeks of every month.

Am I the only one? Can't I just go get some parts removed? Would that help? I'm totally willing!

[bny806]

I have some weird neuromuscular disorder that is improved by IVG (not seropositive MG).. and it is also dramatically affected by hormones- premenstrual all my muscles get weak, esp swallowing and my droopy eyelids!!! Thats when I landed in the hospital a year ago, my symptoms got so bad at that time of the month I couldn't move or breathe!! I'll be curious to hear others responses!

[Anacrusis]

Yes! - ovulate every 3 weeks and hey presto,´enhanced´myasthenic weakness for 2 days before menstruation - every time. (did NOT notice this a couple of years ago when symptoms were much worse) And Shame on all those who attributed my weakness to a menopause I wasn´t even having!!!!

[Stellatum]

Yep, add me to the club. I almost always flare a few days before my cycle begins and feel better a couple of days into the cycle. I have never had PMS, but my MG flares follow the PMS schedule.

Once I talked my ob/gyn into supplementing my progesterone at the end of the cycle, thinking that it was the drop that was setting me off. I tried it and it made me sick, so I stopped taking it--and fell from a higher level--and ended up in the hospital for a week. So, be very careful if you decide to mess with the hormones.

Anyway, this phenomenon has been studied a bit. Two thirds of pre-menopausal women with MG experience the pre-menstural MG flare. http://www.ncbi.nlm.nih.gov/pubmed/9559997

Abby

[rogerm213]

Riding my bike does not seem to effect my MG but does tire me out. Sorry I could not resist!!!

[SoftTalker]

Yes. And No.

This is complicated.

I had to have an emergency partial hysterectomy a year before my MG was diagnosed.

Doc left ovaries. But I did not have the "cycle" anymore. So I can't say yes or not definitively.

A couple of years after MG diagnosis, gyn said I needed to take estrogen supplements to help with estrogen.

However, when I started on oral estrogen supplemention - my MG was greatly exacerbated. Not to point of crisis. I had to stop taking oral estrogen.


Here is a little PubMed statement about menstrual cycle and myasthenia gravis:

http://www.ncbi.nlm.nih.gov/pubmed/9559997

[christa]

Originally Posted by rogerm213

Riding my bike does not seem to effect my MG but does tire me out. Sorry I could not resist!!!

Ha! I'm just jealous you can ride your bike! Yes that was all too tempting to say I'm sure, I left that wide open...

[christa]

Abby and SoftTalker, you both linked the same article. That was very interesting. Thank you! Especially as I've wondered time after time if birth control pills would help, if a hysterectomy would help... ad naseum.

So- what's the link? I'm positive there is a link. This last month, my cycle was very easy (which happens once every 3 or 4 months, sorry TMI) and I am a few days past and feel wonderful! The last two days have been lovely. Not pre-MG lovely, but "hey I can totally do this, no big deal" lovely.

It just leaves me again thinking "how can I fix this??!!" Ablation??

[SoftTalker]

Originally Posted by christa

Abby and SoftTalker, you both linked the same article. That was very interesting. Thank you! Especially as I've wondered time after time if birth control pills would help, if a hysterectomy would help... ad naseum.

So- what's the link? I'm positive there is a link. This last month, my cycle was very easy (which happens once every 3 or 4 months, sorry TMI) and I am a few days past and feel wonderful! The last two days have been lovely. Not pre-MG lovely, but "hey I can totally do this, no big deal" lovely.

It just leaves me again thinking "how can I fix this??!!" Ablation??

Christa,

Not sure how to fix this. Surgery is a big step.

Just wondering -

I believe there is a Birth Control RX that stops menstrual cycles.

Also patches. Not sure which hormones are involved.

I forget.

LOL - altho, I posted recently on memory issues. But I do forget....

Going to leave this to the smarter, more medical-informed posters here.

Good luck and
STOP LOOKING GUYS !!!!

kidding, just kidding................

[4-eyes]

Hi,

I seem to be the "resident guinea pig" here on the forums and have some insight from both sides of the fence. Here goes:

MG for me started soon after the birth of my daughter. My first symptoms coincided with my first cycle after giving birth, which was delayed as I was breastfeeding. From that point on, I would have intense symptoms associated with ovulation and then again the onset of menses.

The symptoms morphed through the years, until I was having the flare up at ovulation, but it would continue all the way through the menses, which meant approximately 21 days of each cycle were quite severe. If I was lucky, I would get a week without severe DV or bulbar issues.

I tried the pill to suppress ovulation with no results. I tried progesterone during the luteal phase with no results.

I did the high dose cytoxan in 2010, and had an almost immediate resolution of almost all of my symptoms. Coincidentally, I also was thrown into menopause as the cytoxan killed my ovaries. I wonder, even to this day if my improvements have more to do with the menopause than the actual action of the cytoxan. I guess we'll never know for sure.

My dd has some issues (ADHD, etc.) She also has an increase in her issues during the same times of the month. It is quite common with all sorts of neurological/neuromuscular/autoimmune maladies to have an increase in symptoms with hormonal shifts. It is not specific to MG, and as far as I know (and I've researched a lot), there is no real solution.

Hope this helps.