Is perimenopause making my ms symptoms worse?

[Shayk]

Erika

So good to see you post again but sorry you’re having a rough go of it at the moment.
I had saliva hormone testing done by: ZRT Labs. If you scroll down the page you’ll see a link to a pdf “symptom checklist” to help you/your doctor decide which tests may be appropriate. I was very pleased with their services which included recommendations for how to proceed.

According to their site they do offer International Services Their lab values re: various hormone levels were specific to their lab.

One of the things they emphasize is “hormone balance”. I had no progesterone and oral progesterone did not raise my levels so we went with progesterone cream.

With estriol, we went with the 8mg that was being used in the trial for RRMS. The results of that trial have not yet been published but I’m hoping they will be this year. There is another trial Estriol for Cognition for RRMS, SPMS and PPMS. Once again they are using 8mg estriol.

Here’s an article by some Polish researchers, so maybe they could be of assistance ???
Endogenous Neuroprotective Factors: Neurosteroids

Wishing you all the best and hope this helps some way, some how and that you can get it sorted out.

Sharon

[ErikaSlovakia]

Dear Sharon,
thank you very much for your answer. I will send it to my gyno as she is waiting for some answers from this forum.
I am sure women in menopause know that but I also have to say that my symptoms get worse after spicy food.
I started with 1 mg of estriol because I had problems with estradiol and other HRT.
My gyno is very scared to prescribe me it. I asked her for 4 mg daily but I want to test it first.
Today is my day 4 with estriol only.
I had strong cramps with estradiol after 4 days and my MS got really worse. I was unable to function.
Thank you again!
Erika

[ErikaSlovakia]

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

Thank you Vesta!
No, I don´t have endometriosis. Doctors took out couple of myomas out in 1998. I have one more, but the gestagen I take keeps it small - only 2 cm.
More patient sent me some information. I sent it to my gyno. She did not know about estriol and MS...
Sorry, I am too weak to continue
Hope you feel better then me!
Erika

[vesta]

Hello Erika, The cramps alone can cause all these MS symptoms. I always assumed my hormones were making me Dizzy and throwing me off balance, but I realize now that it's poor fluid circulation and congestion in the head at the root of the symptoms, and if I can get someone to release the shoulder tension, even with a short 30 second massage, I feel better. The cramps mean you'll need frequent, short massages. I hope you can get the cramps under control soon which should relieve you, Vesta

[ErikaSlovakia]

Hello Erika, The cramps alone can cause all these MS symptoms. I always assumed my hormones were making me Dizzy and throwing me off balance, but I realize now that it's poor fluid circulation and congestion in the head at the root of the symptoms, and if I can get someone to release the shoulder tension, even with a short 30 second massage, I feel better. The cramps mean you'll need frequent, short massages. I hope you can get the cramps under control soon which should relieve you, Vesta

As I take gestagen every day I do not get my period so I do not get any cramps. Moreover my myoma doesn´t grow. I don´t say it is the best idea but it is the only idea that works with me.
Erika

[vesta]

Hello Erika. Sorry, I misunderstood you. On another post (I can't find it now) you mentioned symptoms in your head, heat or congestion? This may yet be poor fluid circulation in the head which an upper back massage may relieve. Where can I find the other thread? I hope you are feeling better. Sorry again, Vesta

[ErikaSlovakia]

Hello Erika. Sorry, I misunderstood you. On another post (I can't find it now) you mentioned symptoms in your head, heat or congestion? This may yet be poor fluid circulation in the head which an upper back massage may relieve. Where can I find the other thread? I hope you are feeling better. Sorry again, Vesta

I posted there the same question as in this thread. It on the page number 1.
"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"

[ErikaSlovakia]

Headaches and Estriol.
I started with 1 mg of Estriol for the first 6 days. Now I am the third day on 2 mg and suffer from strong headaches. I plan to take 4 mg daily.
Will I have these strong headaches all the time?
Erika

[vesta]

Has your blood pressure been checked? Forty years ago birth control pills gave me terrible headaches, I thought my head would explode, so I stopped and the headaches stopped too, almost at once they began to recede so I'm certain the hormones were the problem. Just an experience with hormones. Vesta

[ErikaSlovakia]

Has your blood pressure been checked? Forty years ago birth control pills gave me terrible headaches, I thought my head would explode, so I stopped and the headaches stopped too, almost at once they began to recede so I'm certain the hormones were the problem. Just an experience with hormones. Vesta

I check my blood pressure twice a day as I have often problem with palpitations or higher BP.
I have never mentioned in public but since my childhood I have constant problems/stress with my aggressive and drunk father.

I am almost sure these headaches I have are from estriol. But if I quit I have no more chance to recover from hot flashes...
Whole last year I had serious problems with hyponatremia. Ended up twice in hospital almost in coma. I believed this year will be much better.
I will take only 1 mg tomorrow in the evening as I have to go to my health insurance company - the producer of estriol has stopped to sell estriol in Slovakia. I get it from Czech Republic but it is quite complicated. I am lucky I can still walk. "Just" my head is a problem.
Erika

[Shayk]

Erika

I am so sorry you are having a rough go of it and I'm pleased others are providing input.

I wanted to add that I'm not certain what you mean by "gestagens"--other than I think it's a form of progesterone. In my reading it seems "natural" or "bioidentical progesterones" may be the best alternative, so I hope that your gestagen is "natural" or "bioidentical progesterone" and not a synthetic form of progesterone.

Here's some of the literature (I think I've posted it before but just in case you missed it, full article is available, but it takes some doing to get through it):

Progesterone Synthesis in the Nervous System: Implications for Myelination and Myelin Repair

However, it is important to call here attention to the fact that not all synthetic progestins are the same, and that they belong to different classes with very distinct pharmacological properties and actions (Stanczyk, 2003; Hapgood et al., 2004; Schumacher et al., 2007, 2008). Thus, whereas Nestorone promotes myelin repair and has neuroprotective properties, the progestin MPA is devoid of such beneficial effects and can even become harmful for neural cells (Liu et al., 2010; Hussain et al., 2011). Indeed, in contrast to natural progesterone and Nestorone, the synthetic 17-OH progesterone derivative MPA was inefficient in stimulating the formation of new myelin sheaths in organotypic cultures of cerebellar slices (Hussain et al., 2011). Likewise, whereas progesterone has a beneficial influence on EAE, the administration of MPA increased disease severity (Arnason and Richman, 1969).

An important question, then, is whether it is meaningful to focus on the therapeutic promises of synthetic progestins for the treatment of demyelinating diseases, or whether the use of natural (bioidentical) progesterone should be preferred?

On the other hand, natural progesterone may offer a better benefit/risk ratio for prolonged treatments than synthetic progestins. This is strongly suggested by results of the large French E3N prospective cohort study, showing that in contrast to HRT with progestins, the use of natural micronized progesterone is not associated with an increase in breast cancer or thrombotic risk (Fournier et al., 2008; Canonico et al., 2010).

Natural progesterone, tested in most experimental preclinical studies, may also offer a wider range of benefits than the more selective progestins. Indeed, progesterone exerts multiple beneficial effects on the nervous system, which may not be mimicked all by synthetic compounds.

Here's an abstract on in vitro research: Differential effects of synthetic progestagens on neuronal survival and estrogen neuroprotection in cultured neurons

Our results demonstrate a range of qualitatively different actions of progestagens in cultured neurons, suggesting significant variability in the neural effects of clinically utilized progestagens.

It may be worth checking with your doctor to see if your "gestagen" is synthetic or natural and if it's synthetic, whether using "natural" or "bio-identical" progesterone might be a possibility?

My thoughts for the day and wishing you all the best...

Sharon

[ErikaSlovakia]

Hi Sharon,
only short answer now as I am very sleepy.
Yes, gestagen is a progesterone. Yes, it is synthetic for sure.
Very bad news for me is that we still do not have any bio-identical progesterone/estrogen - simply NOTHING in Slovakia. I mentioned it to my gyno as well. She said no word.
I am trying to find some in Czech republic but it looks it is so expensive I cannot afford it.
I asked a friend who works in pharmacy. He has never heard of bio-identical hormones but will try to find out something about it.
I will read your post more carefully tomorrow.
Thank you!
Erika

[ErikaSlovakia]

It is impossible to get bio-identical hormones in Slovakia neither Czech Republic.
I still have headaches from the Estriol pills - I take only 2 mg daily.
Where can I order bio-identical estrogen without prescription? And then I do not know what type exactly.
I still have these symptoms: Hot flashes, night sweats, insomnia, blurry vision, dizziness, headaches, fatigue, depression and anxiety, palpitations, memory problems, difficulty concentrating.
Blood test show that my estrogen is low, but I am not in menopause yet.
Maybe some of you have some good idea for me.
Erika
P.S. I am very weak. Hardly read and type.

[Shayk]

Erika

I am so sorry you are having all those symptoms. Has your physician checked your thyroid levels? Some of the symptoms you listed could also be MS related but some could also be related to thyroid issues--at least my reading suggests that's a possibility.

Unfortunately the only place I'm aware of where you could get estrogen without a prescription is Argentina. I traveled there over 10 years ago and saw that it was available over the counter.

Another alternative might be to see if your pharmacist friend could make a form of estrogen???? Both estriol and estradiol (forms of estrogen) can be compounded by pharmacists.

Those are the only ideas I have at the moment. Here's hoping you feel a lot better and stronger soon.

Sharon

[ErikaSlovakia]

Erika

I am so sorry you are having all those symptoms. Has your physician checked your thyroid levels? Some of the symptoms you listed could also be MS related but some could also be related to thyroid issues--at least my reading suggests that's a possibility.

Unfortunately the only place I'm aware of where you could get estrogen without a prescription is Argentina. I traveled there over 10 years ago and saw that it was available over the counter.

Another alternative might be to see if your pharmacist friend could make a form of estrogen???? Both estriol and estradiol (forms of estrogen) can be compounded by pharmacists.

Those are the only ideas I have at the moment. Here's hoping you feel a lot better and stronger soon.

Sharon

Hi Sharon!
I have hypofunction of thyroid since 19. I take 50mg of Levothyroxine. My last blood test were done in November 2013. It was as usually little bit lower then normal.
My pharmacist friend has checked whole Slovakia. No pharmacy is able to make hormonal creams. They do not even think about that.
I feel horrible. I was three days in strong painful cramps all over my body as I used to have during my periods. I had to stop the estriol.
I have decided to go for hysterectomy as there is no way anymore how to be without pain and have "normal" regimen of hormones.
Of course I want to keep my ovaries.
At the same time I try to solve my nerve pain in both arms. I have problems with side affects of the drugs.
Oh people, I am so tired of solving problems for so many years. Like the womb - pain for 30 years.
Erika