Menopause and ALS: Estrogen, Progesterone therapy?

[August2]

Anyone out there going through menopause with ALS? The reason for treatment is for extreme hot flashes and no sleep. Not sure about adding hormones to the mix. If anyone has had experience with this combination would welcome advice.

 

[KarenNWendyn]

I'm on combo Estradiol patches and Progesterone pills and have been for several years before the ALS started. They work great. I don't see why there would be a problem doing this with ALS, though I'm going to try to see if I can opt out of future mammograms

 

[LizF]

Me! I think it's really unfair and since we have an ALS dx, should be able to opt out of lesser things like menopause
I have relentless insomnia, but have my whole life so have learned to live with it.
As for hot flashes, mine are more like incredibly warm but not quite sheet-soaking sweat baths, so I have not been taking anything.
xx

 

[Nikki J]

There is theory that female hormones may be neuroprotective which may be why women are less likely to get SALS. Certain forms of FALS ( such as c9) have slightly greater onset ages in women Here is one study
https://link.springer.com/article/10.1007/s00415-012-6665-

 

[ShiftKicker]

I take Spironolactone for the night sweats, irritability and hot flashes. I may not be at "the change" quite yet but I do experience some of the fun stuff as I ramp up to it. Spironolactone also helps me with water retention. I aim for efficiency in my meds.

 

[Tedstehr]

There is theory that female hormones may be neuroprotective which may be why women are less likely to get SALS. Certain forms of FALS ( such as c9) have slightly greater onset ages in women Here is one study
https://link.springer.com/article/10.1007/s00415-012-6665-

Nikki,

Does that mean I may be able to protect myself from further ALS progression if I am willing to grow breasts?

 

[KarenNWendyn]

Ted,

If you want boobs, I’m sure hormone therapy is cheaper than Radicava, even in Canada.

 

[KW1234]

I have decided no more mamograms and no colonoscopies. My progression is fast and I have no intention of enduring more discomfort than I have to. I am one of those rare birds that never had a hotflash. I have been a vegetarian since I was 13. Not sure if that is related, but with all the hormones they inject in to animals for meat production, I suspect it is.

 

[KarenNWendyn]

KW1234,

I’ve been thinking about you and your rapid progression. I send you my deepest wishes for things to slow down and for a long plateau. Most of all, for more comfort and less suffering in the months ahead. I totally hear where you’re coming from with wanting no more mammograms or colonoscopies. Big hugs.....

 

[KimT]

For those of you over 50, Medicare covers Cologuard. I had it done this year because I didn't want a colonoscopy. I also didn't want colon cancer. My mother died from colon cancer. My test was clean. I think it runs around $500 without insurance. All it takes is a poop sample.

 

[KW1234]

Hi Karen

I am actually okay with the fast progression. I am an impatient person and the frustration of this disease messes with my normally cheerful disposition. I am content with the life I have lived. I don't want to be a burden on others any longer than I have to be. As a christian, I look forward to running into my Father's arms, singing and partaking in a sumptuous feast.

In the meantime, I continue the journey, love others as best I can and try not to complain too much. I spend a lot of time watching the birds out my window, we have so many varieties here in Oregon, as there is little I can do now.

Karen

 

[Lkaibel]

I love what you said about running into your Father’s arms, singing and partaking in a sumptuous feast Karen - beautiful. While I am not comparing my life as a CALS with yours as the person with ALS, I take great comfort as we deal with Brian’s progression in my belief that love like ours in the service of a God. I felt that when we met and feel it still.

 

[Smith2026]

KW1234

I too agree with what you said about running into your fathers arms...thanks so much for that thought!!!!