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Old 10-30-2012, 02:35 PM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
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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.
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"Thanks for this!" says:
seishin (01-16-2013)