Progression and Menopause

[Special Kay]

The current issue of Momentum (NMSS magazine) includes the following blurb:

"Dr. Riley Bove, recipient of a Clinician Scientist Development Award, co-sponsored by the Society and the American Brain Foundation, gathered information on MS during menopause from 391 women enrolled in a large-scale, long-term study at Brigham and Women’s Hospital in Boston. The results show that disease progression changed at or around menopause toward a more rapid accumulation of disability. Further research will determine whether hormonal shifts are responsible, which may lead to a solution for women with MS going through menopause."

http://www.momentummagazineonline.co....hfJ5iis1.dpuf

Yikes! As if menopause isn't bad enough! Is this true in your experience? I'm wondering if menopause caused worsening for you. Thanks for your response.

[MSW1963]

For a five year period of time beginning in my mid to late
20s' I had ON, cognitive sx's and body/face hives that coincided with my period, with onset of sx's within 7-10 days before my period. During this period of time I did not tolerate birth control pills. (BCs at that time had much higher hormone content than BCs of today.)

Near the end of this 5yr period of active sx's, I was dx'ed with Catamenial Epilepsy based on abnormal EEGs. Hives are associated with histamine in regulation of immune responses and have long been associated with CE, Catamenial Epliepsy.

The doc who dx'ed CE warned me that menopause was particularly difficult for women with a CE dx. Talking to a woman in her 20s about menopause is typically just not on the radar, plus my sx's became less chronic for the next 10yrs.

My sx's became full time in my 40s, and impaired mobility has accelerated since then, although my MRIs have remained stable since my dx. A hormone panel revealed I was on the low end of normal range. My gyno at that time rx'ed hormone replacement therapy, progestogen? which just exacerbated everything.

In general there is a 2% to 5% occurrence of epilepsy as presenting sx of MS. The relationship hormones play in MS is not well understood, add the complication of CE and epilepsy in general, let's just say my MS neuro's eyes glaze over when we discuss my neuro related medical history.

I've seen the dx of CE fall in and out of favor among neuro's, even the Epilepsy Foundation, since I was dx'ed, with a lot of stigma associated with it based on my experience.

I've been waiting for the mystery of the relationship between hormones, neuro sx's and MS to be solved for a very long time. It seems I hear less about any progress as the years go by.

Thanks for the link.

[Justsayyes]

No matter what studies show as probable results, individual results will certainly vary. You have to make decisions based on your specific set of circumstances. Menopause did not cause any increase in disability for me. I reached menopause 6 years after diagnosis, I was stable by that time with mild relapses of old symptoms, nothing new.

I did start taking hormone replacement therapy as I didn't tolerate hot flashes very well, and felt that studies were indicating estrogen was good for women with MS.

5 years later I was surprised with a diagnosis of breast cancer, I had no family history. Had to immediately go off hormone replacement therapy, plus started taking an estrogen blocker medication. A year later MS was very stable.

I can only speak for myself. The risk of cancers that may be sensitive to hormones is not worth it for some.

[KitOP]

I too went through menopause without any progression of the MS.

IMO - studies for something like this can be great, but we certainly cannot lump ourselves into a specific group of women and expect the same outcome as they did.

Just like everyone with MS is different, every woman that goes through menopause will have a different experience as well.

Keep the lines of communication open with your medical team and hopefully everything will go well for you.

[MSW1963]

Catamenial Epilepsy is rare but well documented since the
'50s/60s. How many cases of CE went on to develope MS,
I haven't a clue, I only know my own experiences since there's so little research, despite the strong anecdotal evidence based on relief of MS sx's during pregnancy, followed by exacerbations 3-6 months after child birth.

I've never been pregnant, although I do have an adopted daughter, but my MS became debilating pre-menopause based on my normal 'hormone panel' blood work, and has only worsened. Menopause plus aging, who knows.

[sonoragal]

Sorry for late reply but YES! Menopause super activated my progressive MS big time. With Tech however, things seem to b slowing down a tad. Very very grateful it has slowed!

[MyGirlsMom]

For me, the worst of my MS was during the peri menopause years. I got diagnosed in 2009 at 47 years old. I had had MS for many years, but like many here at MS World, docs or others just didn't take my health issues seriously. (Sigh)

In 2007/2008 I pushed my doc to test my hormones to see if I was in menopause as I was really struggling with all kinds of issues. (She, my doc, told me I couldn't possibly be in menopause as the average age is 51). Well, she was wrong....the result came back with a very high FSH, and my very last menstrual cycle ended up being in the summer of 2010.

Following my diagnosis in 2009, I had exaserbations back to back from 2009 through 2011. During that time my MS symptoms were bad at times...especially at night when I was hot from menopause night sweats. My leg pain was very challenging during that time. I finally turned a corner around the end of 2011/beginning of 2012, and my life improved immensely. Yeah!

Since then my MS has been fairly stable. I just had an MRI...haven't yet talked with the neuro, but my primary care doc told me the report said no changes compared to the MRI in 2009! YAY! (Guess I will have to stay on Copaxone, huh? LOL!)

That all said, now I am having bladder issues and waiting for my appointment to see a gynourologist in January. This could be a "woman" issue or my MS...I am trying to be patient. But all and all, MS and Menopause are quite challenging!

[Jules A]

Although as with everything MS it seems there are no hard and fast answers I did want to thank those of you who shared your experiences.

I have been wondering about this and also the risks vs. benefits of hormone therapy. The truth is I'm leaning toward thinking a cancer diagnosis, that I would likely only treat with palliative care, would be preferable compared to dying slowly from the many complications of MS especially if the hormone therapy improves my quality of life in the meantime.

God I hate this disease.

[DonnaD]

Well, you've never met someone who knows so little about menopause. I'm now 52 yo. For the past 5 or 7 years I've had a mirena IUD. I think it's hormones. I was having some sweats but not tons. The mirena stopped my period for the past 5 years. So maybe it stops other problems? Or maybe that's why I now have breast cancer? A few months ago I went to the gyno and she said she thought it was time to take out the IUD so I did a blood test and yesterday she took out my IUD for good (I am 52).

So now that the mirena IUD is gone will I start to have problems? I think I missed all the menopause problems. Or are they just about to start?