Hot flashes and MS: Hello my name is... - My MSAA Community

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Hot flashes and MS

Cocoasmom profile image
15 Replies

Hello my name is Yvette. I am new to this. I guess my story starts in 2006 I had a lot of fatigue, pain and weakness in my arms and went to several doctors who kept insisting I was depressed and kept giving me antidepressants. I knew I was not depressed and grew tired of trying to convince them something was wrong so my suspect relationship with doctors began.

I have had other weird episodes that I never tried to see a doctor about until May of this year when I woke up one day with a loss of control of my left arm and leg. I went to the hospital thinking I had a stroke and a week later after many failed neuro exams, MRIs, lumbar puncture and some IV steroids I was diagnosed with MS.

I am walking without a walker and back to work. I have what I refer to as minor annoyances now my balance is a little off, I get tired easily, weakness that comes and goes, ect. But the worst by far is the heat which makes everything a bit worse and I live in the Houston area!

My real question is for the women here I'm 49 years old and have started at this same time having hot flashes. MS and start of menopause at the same time. I don't know what's what. Any advice??

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Cocoasmom
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15 Replies
heathera1 profile image
heathera1

I have the hot flashes too-I am 56, had my ovaries removed at about 50 (had cysts), then proceeded to get breast cancer, have had a mastectomy and several years on meds that can cause hot flashes (which were miserable). I got diagnosed with MS in December 2015. Since then I have gotten the oncologist to take me off of the estrogen reducing drugs for cancer because of the hot flashes and bone pain. The bone pain has eased up some but I am still having the hot flashes...and lots of other issues. The Drs seem to think I have had MS that was not diagnosed for a long time. The numb tingly leg started in 1989 after a car accident. I was told it was nerve damage from a head injury. Well, things got progressively worse and I finally started screaming for help...finally got some and a diagnosis-MS. Hot flashes could be menopause, could be MS- who knows? Stupid as it sounds, an ice pack on the back of the neck helps mine! My GYN said she went thru menopause 15 years ago and still has them. Yeah, she is retiring soon.

Best of luck to you!

Juleigh21 profile image
Juleigh21

Hi Yvette! I'm 53 and was diagnosed in 2014 but have had symptoms since 2010 maybe as early as 2007. I haven't started menopause yet. Heat is agonizing! I've talked with my GYN about my terror of heat flashes. Have you checked out Polar Products?

Cocoasmom profile image
Cocoasmom in reply to Juleigh21

I'm so new to this I have not yet but I will thank you

WAshingtongirl profile image
WAshingtongirl

Hi, Yvette, I'm sorry you had a hard time getting diagnosed, but I am happy to hear you are doing better today. I went through something similar prior to my diagnosis and believe many others have, too.

I am post menopausal and am extremely sensitive to heat. (I am sorry you live where it is so hot!) Today my face gets beet red and sometimes takes hours to go back to normal. I thought caffeine, hot beverages, stress, high blood pressure, or even heat may set it off. But there appears to be no rhyme or reason to it.

This 'flushing' is quite different from the hot flashes I got during menopause. With those, I felt heat flush or wash through me. I sometimes broke out in a sweat, too. I don't have that sensation now. These days only the exterior skin on my cheeks feel hot-much like a horrible sunburn. My neuro believes my autonomic system is to blame (as I have other autonomic system involvement). She says my thermostat is broken. 😉

I hope your transition through this life change is a smooth one. Looking back, I can't say I attributed any of my physical or emotional changes during that time to MS. I just assumed they were menopausal in nature. However, while my physical MS symptoms waxed and waned during those years, my cognitive problems steadily progressed. I spoke to my neuro about that, but she initially passed it off as menopause. Later, after continued complaints, she sent me to a speech pathologist for testing. It was determined that MS--not aging or menopause--was and continues to be the cause of my cognitive problems.

Sometimes we tend to blame or suspect MS for everything. But that isn't necessarily so. Be sure to share everything with your doctor. He/she should be able to help you sort through it all. And should you still feel you are not being heard, or think there is more going on, continue to push. You know your body best.

Wishing you the best.

itasara profile image
itasara in reply to WAshingtongirl

I agree with you that not all symptoms can be blamed on MS alone. I am not convinced that my OAB is an MS problem and not an aging problem or tha result of pregnancies when I was in my 30s. I have been on HRC since early signs of menopause in my middle or Lat 40's. Once on HRT I avoided hot flashes and the heat today isn't a huge problem with MS as it is for some. I have heard that when/if I eventually come off HRT, the hot flashes will start again.

Cocoasmom profile image
Cocoasmom in reply to WAshingtongirl

Since the hot flashes or flushing (I am really not sure which it is ) started when I was in the hospital in May I thought it was due to MS. Actually originally thought it was due to the IV steroids. I had a partial hysterectomy in my 20s so without a period we won't know for sure till I get in with a gyn.

The flashes do not seem as severe as what my mother describes when she went through menopause. I will walk as little as ten feet in the house and get one. Annoying.

I stay in A/C and have at least two fans going most of the time and definitely to sleep.

I also have some cognitive difficulties which started in hospital it's like I went from 49 to 99 over night but I'm coming back

Nett1959 profile image
Nett1959

Yvette my name is Nett I was diagnosed over thirty years ago. I had just finished college on my way to a great career and I started walking like I had drunk a fifth of liquor they was giving me many pills that did not help the problem. I am doing ok pain is a issue weakness and I get tried fast. Hot flashes it is mess I stayed in AC all the time sometime using alcohol as a cool rub down I even purchase a fan with the AC on high you just getting started but prayer fully you will soon find relief it will calm down. Your physician might describe hormone pills for you if you think that might help. I decided not to take any you know the heat is bad with MS patients.

Cocoasmom profile image
Cocoasmom in reply to Nett1959

True story I hobbled in to the ER that day and announced "I am not drunk". I know that walk

Two fans and A/C

Thanks

nes78 profile image
nes78

i do not know much about menopause but three years ago had hsct which pushed me into perimenopause. i have had ms since i was 23 and have been on and off chemo for my ms in combination w. dmds. i am 38 now and the first thing i thought reading your post was also side effect of meds.

Cocoasmom profile image
Cocoasmom in reply to nes78

It started before I started DMT. So I'm sure it's not that :(

I had a complete hysterectomy 5 years ago so I don't have hot flashes per se but I have heat intolerance Like crazy and have found myself breaking out in sweats. I have my cooling vest from MSAA which is extremely helpful but I also have to keep a fan in my bedroom even with the AC on. Good luck and stay cool.

ynggal profile image
ynggal

I'm extremely hot ALL THE TIME! I was able to get a cooling vest free of charge from the MSAA. I bet you could benefit greatly from some type of cooling apparel. They even have wearable products available at Lowe's. I also drink tons of ice water, which helps.

mskleva46 profile image
mskleva46

Hi Yvette. I 've had to battle hot flashes since I had a complete hysterectomy when I was 48. I've had MS since giving birth when I was 35. I was on Premarin way too long. When researchers came out with a large women's study about hormone replacement therapy I quit the Premarin for fear of breast cancer. I tried every natural product and none worked for me. A new friend who was also beleaguered by hot flashes told me that Clonidine - a blood pressure med - helped her. That has been working for me since I had to take meds for high blood pressure anyway. I take .05 mg two times a day. But my doctor also told me that a small dose of Paxil, an anti-depressant med would probably help if I didn't want to take Clonidine. I hope you find relief. I know how terrible these hot flashes can be.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

I have been dealing with the same problem this summer so l feel your pain! The ac has become my best friend. I also have cooling neck wrap and keep them in the refrigerator at all times. You can find them on amazon and well worth the few bucks. There are also cooling vests that use ice packs but are kind of expensive and heavy.

SWEETCAT profile image
SWEETCAT

Oh my I so totally understand these hot flashes,UGHH... I am 49 also and they are terrible some days and nights.. Also so tired quickly and easily fatigued. Just not sure how to change except really do what is best for me first!!! Stay Cool and hope to chat again soon...🤗

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