Is perimenopause making my ms symptoms worse?

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Re: Is perimenopause making my ms symptoms worse?

Postby vesta » Sun Mar 02, 2014 12:55 pm

Hello Erika: I'm so sorry to hear you are suffering so much. Is it possible the thyroid problem is at the origin of the hot flashes sweats etc? I don't see how a hysterectomy will stop the cramps if you keep the ovaries, hormones originate in the ovaries, and surgery is very hard on the body. Sorry I can't be of more help. Vesta
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Tue Mar 04, 2014 5:55 am

vesta wrote:Hello Erika: I'm so sorry to hear you are suffering so much. Is it possible the thyroid problem is at the origin of the hot flashes sweats etc? I don't see how a hysterectomy will stop the cramps if you keep the ovaries, hormones originate in the ovaries, and surgery is very hard on the body. Sorry I can't be of more help. Vesta

Hello Vesta!
I have hypofunction of thyroid since 19. I take 50mg of Levothyroxine. My last blood tests were done in November 2013. It was as usually little bit lower then normal. I do not think it is the thyroid.

Always when I have my period - since 12 I have cramps as soon as I start to bleed. When I had my 5 myomas removed (1998) I was told I would have to go for hysterectomy sooner or later but for sure. I wanted the doctors to do the hysterectomy at that time but they thought I might have a child. They thought I had endometriosis but explained me after the operation that my womb was not "normal". My ovaries looked fine.
Moreover not to have my period I must take nonstop progesterone - which is not very healthy.
I strongly hope to feel the same as my sister after hysterectomy. She also used to have cramps but as as terrible as mine. She kept her ovaries. She says she feels only little bit strange once a month and only sometimes feels pressure somewhere where her ovaries are.
I also hope to start some more normal regimen regarding my hormones after the hysterectomy. I prefer to go now because my MS is getting worse... I can at least walk quite well with one cane.
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 lyndacarol » Tue Mar 04, 2014 8:45 am

Hi Erika,
I can only share my own experience, which is not exactly the same as yours – I was diagnosed with endometriosis. I had terrible pain every day, not just during my periods. I had a hysterectomy at age 41.

No woman wants to have a hysterectomy, but sometimes that decision is out of our hands; sometimes our circumstances determine what must be done.

As I see it, you have dealt with this problem for a long time. You have thought about it and tried many options for a long time. After much consideration, you are making the decision that is best for you. This may have no crossover effect on your MS; the underproduction of your thyroid may be another totally separate problem – or one day in the future science may find they are all interrelated; but at the moment you can only handle these problems one at a time.

We can live without the uterus (my ovaries were taken; I hope yours will be saved). Then it will be time to move on to the next problem – investigate foods and diet that will strengthen your thyroid (Brazil nuts are a great source of selenium, important for thyroid health.). Then you can focus on MS. Our life here on earth is facing and dealing with one problem after another. You are strong, Erika. You will handle the situation well. And you have a big group of friends here at ThisIsMS cheering you on. You are in my prayers.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Is perimenopause making my ms symptoms worse?

Postby vesta » Tue Mar 04, 2014 9:53 am

Hello Erika: It sounds like your sister's solution could work for you, that you have a similar condition. I would look into nutritional therapy as well. I wonder if the incidence of menstrual/hormonal cramps in women with MS is statistically significant? Wishing you the best, Vesta
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Mon Mar 10, 2014 5:46 am

Hello ladies!
Well, so far my gyno doesn´t want me to go for hysterectomy because of my MS.
I have next appointment with her this week. She also thinks they could and should keep my ovaries.
I have terrible problems wit my nerve pain in both arms - its like burning. Doctors have tried so many drugs but so far only Amitriptylin works against pain but has very strong side affects - my gyno and me as well want to solve this problem and then maybe go for hysterectomy.
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 ErikaSlovakia » Thu Apr 17, 2014 4:06 am

Date of my hysterectomy is April 29.
Unfortunately I still could not find any proper drug for my nerve pain so I still suffer from the side affects :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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Is perimenopause making my ms symptoms worse?

Postby Shayk » Thu Apr 17, 2014 6:57 am

Hi Erika

Thanks for keeping us posted on your status.

Sorry about the nerve pain and burning in your arms and I'm wondering if you've tried alpha lipoic acid (a supplement)?? When I was first diagnosed I had burning, tingling and numbness of my feet/lower legs, a pharmacist recommended alpha lipoic acid and it worked wonders for me for that symptom. I take 600mg in the am on an empty stomach and 600 mg late afternoon.

Alpha lipoic acid is in a clinical trial for SPMS
and there's lots of information about it at this link from the Linus Pauling Institute.

That's the only idea I have for that symptom. Wishing you all the best in your surgery and well being.

Sharon
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Fri Apr 18, 2014 7:52 am

Thank you Sharon!
I haven´t tried it yet. I will definitely go to buy it on Tuesday.

As for my womb, I still have constant cramps since February - since taking Estriol. I was on Estriol only for 10 days I think, only 1-2 mg per day.
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
ErikaSlovakia
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Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Sun May 11, 2014 8:09 am

Just a short post.
I am back home from hospital after hysterectomy. I was bleeding and had complicated hematoma so they had to open me again. I feel better after the second surgery and 2 transfusions.

I started taking alpha lipoic acid yesterday.
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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Is perimenopause making my ms symptoms worse?

Postby vesta » Sun May 11, 2014 9:02 am

Hello Erika: I wish you the best in your Healing. Surgery, that's hard on the body, I hope it relieves you of your pain. Thinking of you. Vesta
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Re: Is perimenopause making my ms symptoms worse?

Postby Lynn62 » Mon May 12, 2014 11:48 am

ErikaSlovakia wrote:Just a short post.
I am back home from hospital after hysterectomy. I was bleeding and had complicated hematoma so they had to open me again. I feel better after the second surgery and 2 transfusions.

I started taking alpha lipoic acid yesterday.
Erika


Erika,
I had a hysterectomy last August. My surgeon and I knew I would be a "slow healer" due to the MS. Everything will be fine, it just takes a bit longer than the women who don't have MS. I took it slow, followed my discharge instructions (no bending, reaching, lifting, twisting) I used a shower seat so I could sit to preserve energy from standing in the shower. I even used my mom's rollator walker to get around the house because I was so afraid of falling since my balance is off. Now the surgery is a distant memory and soon it will be for you, too. I got a lot of advice and support from a website called HysterSisters. Maybe you can too. Sending you healing hugs,
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 » Wed May 14, 2014 2:47 am

Sharon, please help!
I have constant nausea from alpha lipoic acid. I take it in the evening (600 mg) one hour after my last dish.
It looks it helps with nerve pain because I only took one quarter of one pill of Amitriptylin against nerve pain. I have many MS symptoms moreover the nausea. Can I do something about it? I am totally desperate:sad: Shouldn´t I eat something before I take it? My vision is so bad that I am not able to read much about it so I ask you or maybe somebody else knows.

All my stitches are out, histology was negative.
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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Is perimenopause making my ms symptoms worse?

Postby NHE » Wed May 14, 2014 1:46 pm

ErikaSlovakia wrote:Sharon, please help!
I have constant nausea from alpha lipoic acid. I take it in the evening (600 mg) one hour after my last dish.
It looks it helps with nerve pain because I only took one quarter of one pill of Amitriptylin against nerve pain. I have many MS symptoms moreover the nausea. Can I do something about it? I am totally desperate:sad: Shouldn´t I eat something before I take it? My vision is so bad that I am not able to read much about it so I ask you or maybe somebody else knows.


Hi Erika,
Have you tried R-Lipoic acid? Look for a form called sodium r-lipoate, e.g., http://www.vitacost.com/doctors-best-st ... n-capsules
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Re: Is perimenopause making my ms symptoms worse?

Postby ErikaSlovakia » Wed May 14, 2014 11:45 pm

NHE wrote:
ErikaSlovakia wrote:Sharon, please help!
I have constant nausea from alpha lipoic acid. I take it in the evening (600 mg) one hour after my last dish.
It looks it helps with nerve pain because I only took one quarter of one pill of Amitriptylin against nerve pain. I have many MS symptoms moreover the nausea. Can I do something about it? I am totally desperate:sad: Shouldn´t I eat something before I take it? My vision is so bad that I am not able to read much about it so I ask you or maybe somebody else knows.


Hi Erika,
Have you tried R-Lipoic acid? Look for a form called sodium r-lipoate, e.g., http://www.vitacost.com/doctors-best-st ... n-capsules


Hi NHE!
No, I haven´t heard of it. I am so lucky I have so many smart friends!
I will read about it more carefully. It helps with energy which would be also great help for me. I will check if it helps with nerve pain as well. I do not have enough money this month so I will try it later.
Thank you!
Erika
P.S. I still have of course the stupid hot flashes :sad: I have stopped talking progestin and I plan to check my hormone levels in about two months.
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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Re: Is perimenopause making my ms symptoms worse?

Postby NHE » Sat May 17, 2014 11:13 pm

ErikaSlovakia wrote:No, I haven´t heard of it. I am so lucky I have so many smart friends!
I will read about it more carefully. It helps with energy which would be also great help for me. I will check if it helps with nerve pain as well. I do not have enough money this month so I will try it later.


Hi Erika,
Here's an old post of mine that discusses the differences between R and S lipoic acid. Note: Just about anything labeled as "alpha lipoic acid" is a 50/50 mixture of the R and S forms.

natural-approach-f27/topic4347.html
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