My MS Has Been No Sweat. Has Yours, Too?

I never sweat. When I get overheated, instead of sweating, I feel nauseous dizzy/light headed. This has gone on for as long as I can remember. I was diagnosed with MS in 2017 but I suspect I had it many years before being dignosed. I have often wondered if I get physically sick from heat because I cannot sweat.

please discontinue sending me these MS notes unless they find a cure for PPMS
Thanks

I have the same problem. I dont sweat. This in turn makes me overheat easily. My body temp stays near 76.4 when it gets hot my temp goes above 99. This in turn causes me to loose feelings in my hands. I was diagnosed in 99 with MS after a head injury. I sweat fine until about the last 2 years. Im on ocrevus, so hopefully it'll get better. Id like to be able to go outside again when it's warm out.

Hello.
Very interesting to read about.
I have had MS for 45 years. I have also had issues with bladder & have been taking oxbutynin for about 20 years because of spasming & I had wondered if the oxybutynin which causes 'dry mouth' might be causing the 'no sweating' or contributing? Hard to remember what was happening prior to 20 years ago? I also get red in the face & will feel somewhat hot. But I have switched just recently to another med for spasming of the bladder & last nite which was very hot, I did sweat a little?
Even though I don't or haven't sweated, I do have a cooling vest which is also in this Newsletter today.

I sweat a lot and often my hubby snuggles up to me when he's cold because I'm so hot. I've had no periods where I've sweated less, but I've noted over the past year that it's definitely more often.

I don't sweat much at all and never thought about it being my MS, thanks for the info..

I began having bizarre thermoregulation issues about 2 decades before my dx. Chills in the heat of summer while being in the sun, dripping sweat in the midst of winter. In retrospect, I do think it was an early MS symptom.

Now, I can bounce from being too warm to chilly in the space of 5 minutes! Nighttime is nightmare-time with pulling a blanket up, tossing it off all night long.

No timed thermostat for me! I'm always changing it 1-2* up or down. Summer heat? Killer! I think I lose all my body's water in the space of a 5 minute full-body sweat!

Yes! My sister and I have remarked often about the fact that we just don't sweat under almost all sweat provoking circumstances. I don't take DMT so don't know if that would cause a change. Thanks for the info.

I used to sweat profusely, but after being disguised noticed too, that I was no longer bothered by sweat on hot days.

I still do sweat a lot, but only past a certain exercise threshold, so I would say that my sweat response is delayed. This goes for blushing and feeling hot as well.

In my case, it was a blessing since I typically blushed and sweated more than normal, to the extent that I researched an operation where the sympathetic nerve was severed in the neck. So for this situation and a few others, the MS brought improvement.

I realized that I no longer sweat when I had pneumonia and my fever broke. What a wonderful feeling to wake up sweaty! My body does not regulate temperature so it can take me an hour and a half to shower and get dressed because of my cooling down times. Now I realize that I have no idea when I last truly sweated from heat or exercise. I have had MS for 30 years.

Thanks a lot - I thought my sweating was because I was working harder but now I know its the Ocrevus. I also thought I was a slug that didn't work hard enough to sweat so again thanks for clearing that up for me. Interesting how I am learning to look for other explanations for my experiences since being diagnosed with MS in Oct/18. I thought I was constantly yawning and falling asleep because I was a midwife so I never considered looking for a solution to this problem. Keep writing and I'll be reading!

I received my ms diagnosis in 1991 at age nineteen. About ten years ago I stopped sweating and I feel cold all the time. I am currently on Ocrevus for the last 20 month's and still no sweating just constant cold toes and nose.

I sweat profusely even when others are not even warm. It has definitely worsen over time. I was first dish back in 1985 and would sweat only when doing exercise or dancing.

However it has become a problem for me the past 5 years! I start to sweat if I get overheated just standing there and it now leaves me dripping in sweat all over my body. Feel embarrassed around people and uncomfortable in my own skin.
Not to mention I always have my hair clipped up off my neck.
Horrible feeling to deal with everyday.

I thought maybe some of it could have been linked to hormones but who knows for sure. No more menopause and the sweating gets worse

Tried ice bags, cooling vests and neck rags. Only AC and relaxing seems to help.
Any suggestions or info is appreciated.

You are right about the "not sweating anymore" comment. I don't think I have broke a sweat in VERY long time. I was diagnosed with MS in 2000. So far still not sweating! I noticed another strange thing, I have lost all the hair on my legs and arms! This has been happening over the years. Now my legs and arms are bare of hair. I've been forgetting to ask my doctors about it. Any comments or diagnoses? I am just very curious. Please share with me.

I too am a Lemtrada patient, 10 months post round 1. I never had problems with sweating, but I have a somewhat related symptom - I never get a fever no matter how sick I get, haven’t had one in years, even with several bouts of the flu, food poisoning once. I sometimes have a hard time convincing my primary care doc I am sick.

(Unfortunately I am having what is probably the worst relapse since diagnosed 20 years ago, little disappointed in the Lemtrada to say the least)

Over-sweater here, but I'm undiagnosed so far. I have two doctors who are theorizing a demyelinating process, and two who seemed to be concerned about myasthenia gravis. Who knows? But personally, I think it might be nice to not sweat so much. Mine does seem to swing back and forth sometimes though. Like, for awhile, heat doesn't bother me and I'm dry regardless. Then for awhile I'll sweat like a pig close to my core while my hands and feet are ice cubes.. Bladder spasms, pain, other spasms, and weakness in all four limbs are the worst issues I deal with though; makes it really difficult to do much of anything required of me in life. And I hate it.

I was diagnosed in 1997 and not much changed from then until around 2015 and “no sweat” is one of the changes I’ve noticed, definitely feel it has everything to do with ms.

I live in upstate NY and we get 100 plus inches of snow every year and the temperatures can go to - 8 F with ease. I have not used a winter coat for the last 5 years, opting only for a light sweater. I can raise a sweat in summer but it is rare. My favorite MRI tech tells me that his MS patients are rarely cold and it is something he watches for as a symptom. My last MRI was 4.5 hours and the day after Christmas. I was in a pair of short sleeve surgical scrubs and was perfectly comfortable for the entire time. He said it was freezing in the room and was amazed I didn't need a warmed blanket.

I went sweat-free last summer, but after starting Ocrevus 2-3 months ago, I have noticed that my armpits can get sweaty from time to time. Of course, Ocrevus may not be the cause.

Diagnosed w PPMS 5 yrs ago and had symptoms for 4 yrs prior. I only take hi-dose Biotin. I have noticed I am sweating more with exertion. When I vacuum, sweat will drip on the floor. Same when I walk the dogs outside. I can literally squeeze sweat out of my hair. When I hit the shower with cold water, it turns warm by the time it rolls down my back. Hate it!

I do not sweat. Never did. The exception is night sweats and my neck. My neck sweats because I have serious hair.

Man I sweat like a “ stuck pig”.
I’ve noticed it since I was about 22 years old. It would come out of no- where. It would just pour off of me. There will be no triggers ,I.e exercise . There’s also nothing I can do to turn it off. It can be reall embarrassing.

I’m just coming off 5 days of IV prednisone for a relapse. One of the most obvious symptoms of said relapse was profuse sweating on half my torso... highly demarcated down my midline (back and front), only on my right side. It did not go on to my face, nor did it go lower than my waist. It came on quickly and was so heavy, I was wet constantly and would soak through my sheet at night and shirts in the day.

After just one day of steroids it vanished. I am back to being dry again. No one on my healthcare team had heard of this happening but I’m here to say it was definitely an MS thing!

The summer before my 1st exacerbation in 1976, I was taking a Finnish sauna at a cabin in northern Minnesota. For those unfamiliar with it, it’s basically a sweat room where there’s a hot stove with rocks that you pour water over. A friend commented later that I didn’t sweat at all during the fifteen minutes or so that I was in there.

I sweat bucket fulls now. I stay hot. I keep fans on me all the time.

Ed - I really enjoy how you ask others to share their experiences. It is very interesting to know what others are experiencing and how similiar AND different my symptoms are to others.

I too, do not sweat and have not since my MS diagnosis in 2013. I overheat during exercise, hot showers, and high temperature days. Frog Togg Chilly Pad Cooling Towels and a cooling vest help immensely, as does exercising in water. I also get cold very quickly. There is a very narrow temperature range where I feel in my comfort zone. My MS physical therapist says this is very common in the MS patients he sees.

Another unscientific poll: Since MS diagnosis in 86', I have not been ticklish. I've never met someone with MS who has remained ticklish after diagnosis. I think it is more accurate than an MRI!

Hi Ed,
15 years now.. I don't sweat, that being said when I am having a strong episode, I stink.. B.O., no sweat just P.U..
Dr said "thats normal" oh just too much fun..
thanks for the article.

As a kid, I was the one who got school pics taken right after gym class (several times). I was ringing wet. I haven’t sweat in over a decade. I get beet red and overheat if I don’t go in...but I don’t sweat.

I'VE BEEN diagnosed since '85, used to sweat before MS now believe the disregulation of internal thermostat. For years I didn't or couldn't get a fever when I was sick. Been on Tysabri since '07. Inthe last 5-8 yrs. I do get fevers. Good that immune system is working better--hard because fever worsens symptom-- walking, cognition. I'm just recovering from flu--101 temp.! and feel it moved through rapidly. Maybe Tysabri?

....diagnosed in '98, only injected Avonex for 6 mo, then switched to Copaxone for 10 years. Never sweat, just get red hot , wear an ice vest...trying Vegan diet, hope it helps.

I sweat like crazy even in air conditioning and have for years, long before I started Lemtrada. I have had both doses (last one was in August 2018).
I wish I didn't sweat so much.

I sweat profusely but mostly on my face.

Diagnosed Dec 1990, never used to sweat much at all. I live near the beach in Florida so it can get really hot with high humidity. The heat has NEVER bothered me. Just a couple of years ago I began sweating profusely without exertion, walking across the room, the sweat starts at my head and in a matter of minutes, I am dripping all over! So embarrassing! I have always been a “hugger” now when friends approach, I have to say, don’t hug me, I am dripping sweat!! I HATE IT!!!! *thought it was medication related, just had new MRIs and was told new lesions brain and spine and that could be causing the excessive sweating, but no solution! Anyone have suggestions?

Hi, I have not been diagnosed but am awaiting a neurologist appointment. I have many symptoms which could point to MS, one being that I no longer sweat. I noticed this only around 6 months ago. I also have issues with oil glands in my eyes and do not get greasy hair or skin. Has anyone else noticed oil gland changes? Also, the tickling thing, if I lightly touch my skin I get prickle sensation down my legs.

Crazy... I am not ticklish at all anymore either?!!
But sweating? ...let me tell you. It is driving me absolutely bonkers. When I asked my Neurologist about it, he acts like it shouldn’t be MS related. It has been recommended that I lose weight. I am overweight, but I feel very insulted that it is assumed that I sweat for THAT reason, instead of this horrible disease that I get to deal with on a daily. (Which I know I’m not alone.. but it sure feels like it sometimes.)

Thanks for letting me share!

Diagnosed October 2018.
Since my last mild relapse in January I've sweated profusely. The sweat doesn't smell but drips off me and makes me very uncomfortable. My DMT is ocrevous,I'm due for my second IV at the end of the month. My bladder problems and eyesight have worsened since my last relapse. Hopefully after my IV top up it might help improve these symptoms.
Im glad it's not just me that looks like theyve ran a marathon but have only hoovered the living room!!

I was diagnosed in 2008 stopped sweating not too many years after and now that I am going through early stages of menopause getting hot flashes is horrible they actually raise my body temperature to almost fever level if I don’t quickly get Ice on my head neck and chest. Same with heat in the summer for years I can’t be outside very long when it’s hot I use the expression I turn into a limp noodle. Also like I read another persons comment taking a shower is a long process because I have to cool off afterwards I can’t even walk from bathroom to my bed so I can cool off. This symptom is bothersome especially now with menopause hot flashes you never know when they will occur.

I have been trying for a diagnosis (of any kind!) for the past two years. I am on my second bout of uveitis/macular edema this year, and find myself sweating profusely. I change my underclothes at lunch, take a shower when I get home, and wake up twice a night to change our of wet pjs. Today at work, I sweat through my jeans. While I struggle to find a doctor to take any of my symptoms as a whole,(no brain lesions, so the break down every symptom into it's own issue)
it is comforting to read other experiences. Thanks all for sharing!

I have not been diagnosed as a case of MS but for 2 months now I have typical symptoms of the disease.
My worse symptoms are fatigue, shoulders spasms and dizziness.
But profuse cold sweatings on my scalp, shoulders and left arm is not giving me rest.
I am only on milga and omega3 because of numbness and paresthesia.
What is the way forward?

Thanks for your article. I was diagnosed in ‘90. I have recently started sweating profusely just sitting still and worse when I sleep! I have SPMS after having RMS for over 20+ years. I am in a LNF and am now bed-bound and the last three days the sweating has increased to where I have to change at least 10x a day! Docs can’t figure it out. Thanks again to everyone who wrote in! Love all. Be safe.
???

Was diagnosed in 2003, stop sweating totally, been through 17 MS treatments I have 37 food and medication allergies since the MS. Food intolerances, i gained up too 262 pounds. I came off all MS drugs and go gluten free, lactose in tolerant and dropped too 113 pounds. I am able to walk again and out of my wheelchair. Still have bladder and bowel issues. The no sweating stopped 2 years after diagnosis. I started to sweat after I started menopause. I only sweat on my head. My hair gets drenched with 24 hours or less after night time hot flashes. I get so overheated and have ac low and the fans wide open. No summer time for me or spring, I feel so isolated and feel bad that I can't do more with my kids or husband. Is anyone else dealing with this and all the allergies and food issues.

Same here, I can just be standing there and suddenly I'll be dripping with sweat. Fans on, windows open, damp towel round my neck. I know folks do sweat more in the summer, but I take it to a whole new level. I thought it's the menopause, but I'm now 57 and its been really bad for last few years, and has got worse last couple. Never thought it could be my MS, as I always thought MS made you feel cold.

I was diagnosed in 2018, at the age of 61. I’ve never really been a sweaty person, unless the weather is particularly humid. Even during the menopause I didn’t suffer with hot flushes, so nothing prepared me for the sweating I get with my MS hugs, which always happens at the end. The sweat just runs off me and I can only describe it as being in a sauna, but it’s a relief to know that the pain I’ve been in during the hug is about to disappear!