This Is MS Multiple Sclerosis Knowledge & Support Community

ok i just went in for labs and a neuro visit. both went pretty well. i signed up on a new online results platform with a new test provider, and some of my results are already in at no extra cost. it's all just cbc so far. will be looking forward to the rest of the req's findings.

the last result came in just in time for today's appointment. everything looks pretty good - here's hoping i can get a few things accomplished!

ok that was okay overall, a bit surprising in some ways, and disappointing in terms of what i'd hoped for with E3.

Hi! I hope you don't mind me jumping in. I have also been looking into the link between hormones and MS activity. I was dx at the age of 23 almost 30 years ago. My course has been mild, with some bumps here and there. I had been on birth control since forever and recently had blood work showing that I'm in menopause. My OB/GYN wanted me off all estrogen, but my neuro felt very strongly that "estrogen is a neuro protector" and wanted me on some level of estrogen. I was off all estrogen for about 1 month and then started hrt Mimvey about 2 months ago, which contains 1 mg of estradiol. I've been having a tough go the last few weeks, dealing with a mild/moderate flair (and the ramifications of 3 days of solumedrol). I don't know if it's a coincidence or due to the changes in my hormones. I know that the type of estrogen that I am now taking is different from what I was taking in my birth control pills. My OB/GYN is trying to help, but had no idea about the link between MS and hormones, let alone what to do for it.
Jimmylegs, did you get an estrogen prescription? If so, I'm just wondering what you were prescribed and how you're feeling. Do you have any information on the specific type of estrogen that is most beneficial to us?

Karen

hi yes i did, and surprisingly, thyroid as well.
the regimen is
am: 30mg desiccated thyroid (on an empty stomach, and away from other meds/supps)
pm (bedtine): two metered doses (pumps) of estrogel (ie 17B estradiol gel), and 100mg prometrium (progesterone)
it's apparently timed that way because thyroid meds can interfere w sleep, and progesterone can make you sleepy.

balance/diseq has been my major problem over the last year or two. i know it's not bppv/vitamin D related. i do feel a little better since starting the estradiol/prometrium, but it is too soon to tell re the desiccated thyroid. end of this month, we retest the thyroid panel to see if the dose needs tweaking. overall, i still feel bad enough that i continue to look for a local specialist who'll entertain the E3 (estriol) idea. i'm after replicating a pregnancy (with a gentle taper 'post partum') as best i can, and the E3 idea is basically as far as i've gotten with that so far. beyond that, i've seen research somewhere suggesting that estradiol at some level could be neuroprotective for men and women both.

in the meantime, i also just found an interesting rehab option that i may try out for my diseq issues. physio rehab has really worked for me in the past, and i love all the detail given here!
https://games.jmir.org/2022/1/e31020/
"I enjoyed the intervention through the virtual device so much. I would continue with it.
These kinds of physiotherapy sessions are more motivating than usual ones in which I get bored really soon because exercises are repetitive.
I have improved my postural balance a lot; now I can take a shower with my eyes closed without falling or I can put my pants on without sitting down."

jimmylegs wrote: ↑Tue May 03, 2022 6:19 pm”... I have improved my postural balance a lot; now I can take a shower with my eyes closed without falling or I can put my pants on without sitting down."

Practice a Romberg test. Use a dark room, e.g., a windowless bathroom with the door closed and the lights off. Stand as long as you can with your feet together and your arms by your side. Be prepared to grab the counter top if you feel yourself starting to lose balance.

https://www.ncbi.nlm.nih.gov/books/NBK563187/

Another good exercise is juggling. Spend a few dollars and get the leather covered beanbags (usually sold in the toy section of your favorite retailer).

Once you get good, try stepping it up by juggling while turning around in circles. I used to do this when I could still juggle. No kidding.

viewtopic.php?t=8412

Now I’m hooked on Jumble.

https://fun.chicagotribune.com/category/Jumble

it's hard to say for sure, but i think along with the hormones, getting on the rebounder has been good low tech rehab for me. at first the challenge was to let go of the door knob or door frame, that's ancient history. next, i added large arm circles, forwards and backwards. i've been in the habit of trying to function in the dark all along, but maybe next time on the rebounder i'll see how long i can manage with eyes closed. anyway when i saw my neuro last, i did much better staying balanced with my eyes closed than i had at the visit prior. that said, it still takes an unusually good day for me to have a hope of getting dressed without needing to sit down lol
re jumble, someday. for now, i just come in to the rescue for others, when/if needed. and for that matter, still haven't even taken a look at wordle

Thanks for all the info, Jimmylegs. I wish there was more info out there and more actual studies looking into the MS/hormone relationship!

no problem you and me both! 'huh, pregnancy good, neat. moving on!' there have been more clinical trials of E3 for MS than thyroid for MS, but so far this hormone specialist is set in his inflexible ways. at least those ways supported E2/progesterone for a start, and my ways include being open to optimizing thyroid numbers! (especially since he's into desiccated, not synthroid).
it drives me a little crazy knowing the E3 I want to try is readily available in Europe

i spoke to the local pharmacy months ago. E3 will be readily available to me here too, as soon as I find the person who'll write the prescription.

My concern is that when I was on birth control it contained 10 mg of E2 and now with HRT it's 1 mg of E2. That's a big difference.

it is! i always avoided OCs, not realizing there could be a neuro benefit in my case, and now the estrogel has added 1.5mg on a continuous basis. i know some people are on three metered doses per day, ie 2.25mg, and I might look into trying that out. still nowhere near 10, though!

so i had a GREAT call with a prospective new specialist this morning. i'm pretty excited about next steps

i ordered topical E3 a while back and it arrived Friday. so far, it is ***MAGICAL***. hope i get to find out what E3 is like taken internally. TBD.

Um. How is it magical???

i have worsening autoimmune skin issues that i noticed also improve in pregnancy similar to ms. so i thought i would try spreading some topical E3 on it to see what happened. my skin is almost entirely cleared up where i've applied it. unheard of ime. the only thing that ever came close was the now-discontinued calcipotriol ointment. if the E3 works this well on the outside, i really wonder what it could do when taken internally.