Does your cycle affect MG? (sorry guys)
 

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. :eek:

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

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!

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!!!!

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

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

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

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...

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 !!!! :eek:

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

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.

4-eyes,
I could have written this, as it is a more accurate description than what I wrote myself. Most months, I get a reprieve from symptoms (never completely gone) for less than a week, and sometimes I get lucky and have longer. Sometimes that reprieve never comes. But it all seems to revolve around that stupid cycle! Maybe the symptoms aren't exactly the same, as I have general weakness and DV issues mostly (at the moment), but the rest sounds eerily familiar.

And this is exactly what I was thinking of trying, and why I was hopeful that going a nutritionist/holistic route might work.

And thank you, it does help, although it still feels like there must be a simple fix.

Thanks, 4-eyes, for all of that. I am 46 and expect to hit menopause...eventually (my mother had a baby at 47--he's younger than my oldest son!--so I expect my own menopause to be late). But I have been wondering if, when I do hit it, my MG will improve. Sounds like there's hope.

I suppose it would be worth-while to try the natural treatments for PMS: mostly nutritional advice (avoid anything that tastes good, etc. :) ), and lots of B vitamins. Anything else?

Abby

LOL, Abby, I've tried it all--diet, supplements (evening primrose, flax oil, vitex chaste, soy isoflavones, progesterone cream, estrogen cream, Vit B 12, etc). I even did a series of acupuncture treatments, to no avail. The endocrine and neurological systems, or the body systems in general are so interdependent, I am afraid there is no simple fix.

Like Abby, I was anxiously waiting to see if natural menopause would make a difference. I was definitely in peri-menopause at the time of the chemo and things were actually getting worse by the month, so I don't know if eventually things would have reversed or improved. I have a friend with MG who has gone through natural meno, and there is some difference in her symptoms (in a good way) but even she is still on a multitude of MG drugs and is still very much affected by MG.

It's always something!

Seriously, this thread is a God send. You can't imagine how helpful all of your cumulative experiences are.

Having spent the last 15 months in search of a natural cure, or even natural treatment, it feels like I have been chasing my own tail. I have given up sugar, gone vegetarian, juice fasted, gone gluten free, (I've tried most of these diets more than once) spent alot of money (!!!) every month on supplements, and when I look at my very crude symptom calendar it still resembles a roller coaster.

Currently :eek: I am eating gluten free. And I've had a really fantastic couple of days- which are more likely related to my internal calendar.

I believe a sigh is in order.

Good news though, (pending dr referral) I've got an appointment with UTSW in December (so much better than the June appointment I was first looking at) thanks to 4-eyes recommendation.

Nice work, Christa! I hope you appreciate my dark humor, as my first thought was, "Someone musta DIED!" :p Quick appointments are rarer than hens' teeth at UTSW!

Hang on and take care!

I have had horrible time starting about a week before and during as well BUT noticed huge reduction in severity of symptoms since starting prednisone (2 months now)

Steph

FYI - MG got really bad after menopause. It actually improved during peri-menopause but once I was in menopause, terrible.:frown:

Interesting. Have considered or are you using HRT?

I know a local woman here that is mid 60's and is suddenly having a terrible time with her symptoms as well, after 30 years of relatively mild symptoms. Suffice it to say, MG STINKS!!!:mad:

I take hormone replacement therapy. I have not idea whether it has any effect on my MG. I have been taking it for years. It does seem to keep those around me from becoming evil.

Yes it does vary much so. Every month even a few weeks before my cycle I become weaker. Everything is affected so much worse, my legs and arms to my hands get weaker and don't even get me started on my speech. It affects that greatly. A few days before my cycle and on the day it begins I don't even go out the door unless I have to. :eek:

Funny thing - my gyn recommended my current neurologist and HRT to try to help. Some doctors have a good well rounded education. They work together to try to help me but I continue to decline. Just tried IVIG and except for aseptic meningitis and a BAD reaction to the spinal tap, looks like it worked!!!

Funny, I was having weird cycles every 2 to 3 weeks - (perimenopausal maybe?) prior to taking predinosone and mestinon - haven't had a period since I started the meds. Anyone else find that?

I use hormone replacement therapy. So far it has neither cured me nor killed me. Without it I have a lot of symptoms that could be described as perpetual PMS, but I don't think that my MG is changed by it one way or the other. I could be wrong. I have been on if for several years. (I had a hysterectomy several years ago.)

JenniM- yes prednisone can "mess up" your cycle.. .. not sure to what extent, but I believe people may not have a cycle until they come off of it.. that's a nice side effect! :)

Hi Christa,
I too suffer sever exacerbations due to my cycle. Usually it's about two days prior to my monthly. Overall I get much weaker but my legs are the worst. I can barely walk until about day two. Unlike most of the others, I've noticed an improvement around the week of ovulation. As well as feeling skinny and having clear skin. Must be my body trying to seduce into another baby. Lol not gonna happen body!!! Hope this helps
Jess

I suffer too. Normally the week before mine, I'll get small things like my speech will go off, I'll feel extra tired in my legs, and I'll notice my blood sugar constantly stays in the low end (like my muscles are trying to get all the energy it can and it drains me), and every so often I will tremble in my hands.

*This* month however, it seems to have started early so now I am at about 2 weeks prior to mine, and I have been feeling like total crap. Complete back pain, weak or heavy feeling in the legs and arms, my speech isn't as good as it once was. Part of it is probably still me catching up from the holidays (I work retail, you can imagine how fun that is!). It's incredibly frustrating to know that for 1-2 weeks every month I will feel horrible. Where's the fun in that :rolleyes: