Is perimenopause making my ms symptoms worse?

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Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Sun Jul 07, 2013 6:11 pm

Hi! I was wondering if any ladies out there noticed their ms symptoms worsening during perimenopause/menopause?

I am 51 years old, diagnosed RRMS in 1990 and going through perimenopause now. For about 6 months now I am always HOT and sweaty with a clammy feeling. I am wondering if my increased body temperature is causing my symptoms to flare up? I can't take the heat. My recent MRI showed nothing new so neuro says my old lesions are acting up.

Any advise would be appreciated!!!
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Re: Is perimenopause making my ms symptoms worse?

Postby CaliReader » Mon Jul 08, 2013 5:41 am

Hi Lynn,

There is some active research that ties depletion of sex hormones, estrogens and testosterone to worsening of MS. I only have a minute this morning. If you search this website for estriol, or hormone you will find links to some of that research. There is a neurologist at UCLA running research trials on sex hormones as treatment for MS.

For the heat issue, the technical term is 'Uthoff's' phenomenon or 'Uthoff's' sign. You could search that also... You've had MS for a while, I assume you already know a lot about the disease...

Very sorry to hear you're getting worse. It could just be heat and summer...
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Mon Jul 08, 2013 8:09 am

CaliReader,

Thank you for some great info I will definitely research into!!

Much appreciated,
Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Is perimenopause making my ms symptoms worse?

Postby HappyPoet » Tue Jul 09, 2013 8:08 pm

Hi Lynn,

Hot flashes were my worst enemy by making many of my neuro symptoms flare; therefore, my doctors (PCP, neuro, GYN) agreed that, despite the known--and unknown--risks, I should start taking hormone replacement therapy (HRT) to stop the hot flashes which was, for me, the correct decision for three years (perimenopause/menopause). Wishing you the best.
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Wed Jul 10, 2013 1:40 pm

HappyPoet,

I was wondering about HRT and have it on my "to-do" list to ask my neuro and obgyn about.

May I ask what type of HRT you took? I heard there is estrogen only and a combo of estrogen and progesterone.

I am in the process of deciding about a hysterectomy. Today I had an MRI of my pelvis and it shows my enlarged retroverted uterus with multiple fibroids. The surgeon said he would leave my ovaries and I would go into natural menopause in my own time, which could be years away. My hot flashes are more like hot days all day!

Thank you for your reply.

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Is perimenopause making my ms symptoms worse?

Postby HappyPoet » Wed Jul 10, 2013 3:42 pm

I took 0.3mg/1.5mg of Prempro (estrogen/medroxyprogesterone) for all three years.

Blood tests, which showed I was perimenopausal, informed my GYN of the correct starting dosage, and I was lucky that I never needed the dosage increased.

Hot flashes were extremely stressful in many ways, and since stress has been shown to cause new brain lesions, my decision to start HRT was an easy one. In my situation, the benefits of HRT clearly outweighed the risks.

Hope all works out well for you.
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Wed Jul 10, 2013 5:26 pm

Thank you HappyPoet.

I hope HRT can help me stop feeling so hot all the time and stop my worsening MS symptoms. It's worth a try because it may help improve/stop my worsening symptoms (or else I could be transitioning into SPMS.)

I will definitely talk to my neurologist about this. I'm glad it worked out so well for you.

Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Is perimenopause making my ms symptoms worse?

Postby Shayk » Thu Jul 11, 2013 9:01 am

Lynn62
Hi! I was wondering if any ladies out there noticed their ms symptoms worsening during perimenopause/menopause?

I was diagnosed at the age of 57 after they took me off HRT so I naturally associated menopause and no HRT with worsening MS symptoms. Simultaneously the initial research on estriol had recently been published.

Consequently, I did a lot of reading about hormones and MS and as I result I’m currently on 8mg estriol/500mg bioidential progesterone (recommended dose after I had my hormone levels tested) and have been for many years, doing well.

Some points I think it’s important to consider—

(a) With respect to progesterone, you may also wish to search the site for posts about that too. I personally think it’s important if you do “HRT” that you only consider bioidentical progesterone, not MPA.

Progesterone and neuroprotection
In addition, we discuss fundamental differences in the neurobiology of progesterone and the clinically used, synthetic progestin, medroxyprogesterone acetate that may offer an explanation for the negative findings of the combined estrogen/progestin arm of the Women's Health Initiative-Memory Study (WHIMS) and suggest that the type of progestin used may dictate the outcome of either pre-clinical or clinical studies that addresses brain function.


This link to one of my earlier posts also identifies issues with synthetic “progestins” and risks of HRT. Bottom line, at least at that time, they were considering synthetic progestins to be the culprit in the risks associated with HRT. Unfortunately some of the links in that post no longer work.

(b) Progesterone has lots of neuroprotective properties that may be relevant to MS. It is a “neurosteroid” produced by the brain, in the brain, for the brain. Here are some rather random links about it.

Non-Classical Progesterone Signalling Molecules in the Nervous System

spotlight shifted to progesterone (P4 )

P4 also modulates such diverse neural processes as cognitive functions and emotion (1, 2), neurogenesis (3-5), neuroinflammation (6), neuroprotection (7-9) and neuronal cell death (10).

A TSPO ligand is protective in a mouse model of MS The full article is available for free at the link.

Local production of neurosteroids such as progesterone and allopregnanolone confers neuroprotection in central nervous system (CNS) inflammatory diseases.

There is substantial evidence indicating that promotion of neurosteroid synthesis may be beneficial in CNS diseases. It has been previously reported that MS patients show a drop in neurosteroid levels, and treatment with the neurosteroid allopregnanolone leads to a partial rescue in mice, causing downregulation of microglial activation and infiltration of peripheral immune cells, and protecting the myelin sheath (Noorbakhsh et al, 2011). Other studies have also shown that the neurosteroid progesterone is beneficial in the mouse model of MS (Giatti et al, 2012; Yu et al, 2010). The increase in neurosteroid production by etifoxine could lead to similar effects as direct neurosteroid treatment, along with offering the direct downregulation of immune cell activity.


I wonder if we really need a “drug” to increase the level of neurosteroids in our brains to provide neuroprotection and remyelination or if we simply need to have adequate levels of hormones ???. Allopregnanolone, identified as deficient in the brains of people with MS, is a metabolite of the hormone progesterone.

Progesterone induced neuroprotection: Factors that may predict therapeutic efficacy
the efficacy of these hormones may depend on a variety of factors, including the type of hormone used (ex. progesterone versus medroxyprogesterone acetate), the duration of the postmenopausal period prior to initiating the hormone intervention, and potentially, the age of the subject. The latter two factors relate to the proposed existence of a "window of therapeutic opportunity" for steroid hormones in the brain.

It’s my impression that the current thinking is that if you’d like to consider HRT, it may be better to do it “sooner”, rather than “later”, i.e., the “window of therapeutic opportunity”.

Progesterone synthesis in the nevous system: implications for myelination and myelin repair

Stimulating the formation of endogenous progesterone is currently explored as an alternative strategy for neuroprotection, axonal regeneration, and myelin repair.


That’s enough really. LOL….I think it’s well worth your time to have your “free” hormone levels tested (saliva testing is one way) and to supplement hormones in accordance with test results to hopefully yield “balanced” hormone levels. There’s lots of interaction among them and it does not appear to be a good idea to have one particular hormone level too high and another low, etc. I had zero progesterone when I had my hormone levels tested. Hence the 500 mg script for it. In women at least, progesterone levels also start to drop way before estrogen levels as we age

All the best to you as you consider this....feel free to pm me if you've questions. Sorry you're so warm a lot.

Sharon
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Thu Jul 11, 2013 10:21 am

Wow Sharon! I just printed all your info so I can ask my obgyn about testing my hormone levels. I will check out all the links you sent, too.

Thank you so much!

Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Is perimenopause making my ms symptoms worse?

Postby Katelyn » Thu Jul 11, 2013 3:52 pm

Hi Lynn,

I'm new here, and I saw your post and wanted to reply. I'm 48 and was diagnosed last year with RRMS, although I've probably had it for 10 or so years. My neurologist is at Ohio State University Medical Center and has been involved with estriol clinical trials, so I was able to get an Rx for 8 mg estriol from a compounding pharmacy. I found that it actually gave me hot flashes, so I took it for a few months and quit. I started on birth control pills, Yasmin, and have found I do much better on the active pills than on the week off. During the week of inactive pills I've also tried an estradiol patch of varying strengths (0.25, 0.5, 1.0) and had the best luck with 0.25, but still not as good as the active pills. So I take 2-3 packs of active pills and suffer through the times off.

And don't even get me started on natural progesterone! It definitely doesn't agree with me!

So for me, I believe that hormones definitely influence my disease.

It was disappointing to me that synthetic chemicals do more good for me than bioidentical hormones, but I have to stick with what works for now.

Katelyn
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Fri Jul 12, 2013 9:48 am

Katelyn,

Thanks for your reply. I appreciate your information. It's good to know. I don't want anymore hot flashes! I'm glad you found something that works for you.

Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Fri Feb 21, 2014 3:39 am

Dear ladies,
I would like to ask you for an advice, please!
I am 41 years old, no pregnancy, couple of years on progesterone - non stop - it means I do not get my period. (My MS was getting so much worse because of very painful period.)
For about 3 months I have problems with hot flushes, sweating, palpitations, and constant dizziness. My MS is getting worse as I have strong heat intolerance.
I have informed my gynecologist about Trimesta...
She just doesn´t know what kind of tests to do. My estrogen was 380 pmol/l last month. Last week it was only 298 pmol/l. Laboratories in Slovakia do estriol test only for pregnant women.
I started to take estriol 1 mg 3 days ago. My doctor just really doesn't know what tests to do and what should be the reference range for estriol.
I am desperate and doesn´t feel good. I am very scared.
What should I do?
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Fri Feb 21, 2014 5:37 pm

Erika,

I am sorry to hear about your troubles. Hopefully someone else will chime in to offer some advice for you. I only know from my experience that my doctor does not test hormone levels, he goes by my symptoms and I had similar symptoms as you which indicated low estrogen so I was started on Premarin 0.3mg. After 2 months with no improvement, my dose was increased to 0.625mg. This dose has helped me considerably. It took about 2 months of the higher dose to notice a decrease in the frequency/severity of hot flashes. I still get some hot flashes, cold chills and clammy but not nearly as bad as before.

I hope you find some help soon. Take care.

Lynn

Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
Lynn62
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Sat Feb 22, 2014 3:19 am

Lynn,
thanks for your answer!
I will try to post the same question to another thread. Maybe I get more answers.
Cannot find any forum for this in my country.
These problems are making my MS definitely worse. Oh what a nightmare :sad:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Is perimenopause making my ms symptoms worse?

Postby vesta » Sat Feb 22, 2014 6:49 am

Hello Erika:
Hormonal problems definitely have been a factor for my MS. I believe the menstrual cramps in themselves tense up the body so much that they cause the "blood reflux" (CCSVI). I used to think the heat was the factor, but now I believe it's the body tension pure and simple which needs to be controlled. Is it possible you have endometriosis as I do? That makes the cramping worse. We are at different life stages, but when I was going through pre menstrual stage I found Evening Primrose Oil pearls very helpful. (They have also been used to treat MS.) I still take 2 pearls a day. I am now 65 and realise I was recently taking too much estrogen which feeds the endometriosis and since cutting way back on estrogen I'm much better. Diet modification and suppléments should help. Some more info on my site MS Cure Enigmas.net.
My hormonal problems vanished in 1985 once I detoxified and began optimal nutrition and suppléments and "energy"' thérapies. And my MS symptoms vanished as well. Too bad I began to eat wheat etc when I moved to France because I went downhill. I wish you luck. Vesta
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