Night sweats one of those things every time you ask the doc they change the subject. I wake up at night some times thinking I have a leak in the water bed, I don't have a water bed.
Do any of you have those and if so how to you deal with it. The only thing that helps is a cool shower, but thats only a short term answer. There have been nights I have tried to get the bed into the shower or vice versa
John
Hello and thanks for your post. I thought you might be interested in reading a few of our posts regarding heat and night sweats. You know heat is not a friend to folks with MS. These posts might give you some tips - like a cooling vest or a bed fan.
Don't Lose Your Cool in the Summer Heat
No More Cold and Clammy Night Sweats
Hope this helps - all the best, sue
Hi John -
I have night sweats almost very night, I have to get my husband up in the middle of the night to change the sheets, I have thrown out pillows 'cuz I sweated through it all.I have to change my t-shirt and underwear often in the middle of the night. Finally my doctors are going to send me to the mayo clinic 'cuz they just don't know. I have had every test the doctors can think of - even a bone marrow autopsy, that hurt !
I hope you can find out why this happens to you and also I hope to find why this happens to me. MS is different in every one , and for someone to say to just deal with it , well I just think they are lucky to not have to go through any of the crap i go through daily, I still work 'cuz I want to, can't drive very much (my husband helps), i don't use a cane, 'cuz i have my husband to help me walk, i can be the best non-drunk , 'cuz i slur a lot, i don't walk straight, and i am sober !!!! I could continue this list of problems, but it is something I have to deal with daily.
Angie,
Yes I've been there and done that! But it has been a while now, never could get a definitive answer about the night sweats. It has been so long now all I can say is I am soclad they stopped. My med regiment has changed a million times since then. I do remember at the time I was often on Solumedral, IV and pill form to stave off flares and to maintain the energy to keep working. I as also sleeping on a waterbed at the time, the heat of that could of had some affect. Treatments have changed so much in my 32 years of playing with this Multiple Sillynes. That's 32 years since first offical diagnosis. What we get as treatment now makes the treatments in the 80's and 90's seem like the dark ages. I do about 12 different medications now, some are due to something called age. There are fewer exacerbations, but I have finally moved to a place just beyond secondary progressive.
Funny story recently, I was being checked by in intern in nuerolgy and he asked when I had my last exacerbation. I told him about 5 or 6 years ago, that I didn't have them any more. He said no way that with MS you have them often. I laughed and said "No I don't". Again I said "No I don't, have symptom days now that vary day to day and in various combenations." He got all flustered and went running to his resident. Resident looked at chart and said "Oh, that's John. Listen to him you will learn things that aren't in the books."
I have found keeping a journal of the actions of my meds has helped tweek the dosages and monitor side effects. After years of having some antidepressive or another, I hated them all. When Cymbalta came out I tried it and it worked well. Till two months ago, I was having great fatigue and found that the Cymbalto was interacting with a newer pain pill I had changed to increase the fatigue.
People just see the ads and stories about MS, Cancers, HIVs, but don't realize having any dibilitating illness is a 'Full time job' in it's self.
Take Care,
John
jdhare@q.com
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Hello John,
It looks like your new to the forum. Welcome. I don't think night sweats is a normal MS symptom. My father goes to the VA for medical treatment for his diabetes. I'm not sure how it is with the one you go to but I don't think they are the greatest. I would definetly press the issue with the doctor if I were you. I know everyone has different symptoms with MS, but you can't blame everything on it. Sometimes there are other things that could be going on.
Good luck.
theresag79
theresag79,
Thanks for the comment; I do know a couple of fellow MS'ers that do have the night sweats. They also have the same response, or non-response from both the VA and private practitioners. They just mark it off to one of those MS nuances.Maybe it's male metopause!!
I use the VA hospital in Denver, which has improved 150% over what it was in previous years. In fact in the last five years it has been rated as one of the most improved. Their tie to the Colorado University med school has really moved the quality to an extremely high standard. They are just in the process of moving into new facilities on the old Fitzsimons Army Hospital grounds. It’s a mega complex of four plus medical groups. I use to go to the VA back in the 80's, and it sucked big time back then. I went without the VA then except for drugs.
Now they check you for every thing, and the communication between departments is exemplary. And they handle MS a lot more serious. I have a MS Team that does an every four month all day head to toe check on the MS. Plus the see me as an individual and are open to any ideas I have. They even check out things I come across in my own studies. The patient is part of the team.
We’re getting a new clinic down here in the Springs also; the troop build up at Ft. Carson is demanding it. Colorado Springs has always been a big military retirement town. We even have a street named after my Dad on Ft. Carson.
I have a couple things age wise that bug the MS or the other way around. But the VA is always checking those things also, you name it they check it. I average five appointments a month, plus the things I do for the NMSS and are local United Way MS Society.
Take Care & good looking kids,
John
jdhare@q.com
It sounds like the VA in Denver is taking care of our vets. That's very good and you are real blessed to have the MS medical team to check you out. Maybe night sweats is a symptom of MS or a side effect of the medication? Well if the doctors ever give you a definite explanation, let us know. Thank you for the compliment on the kids.
TTYL
theresag79
I have been having night sweats for the past 1.5-2 weeks. I stopped my MS disease modifying therapy 18 days ago as we are trying to concieve. The night sweats did not start immediatly but probably a few days afterwards. I am not sure if this a side effect of discontinuing the medication or if this is here to stay.
I did have night sewats when I started the therapy over 2 years ago, but they gradually subsided. I just had my LFTs (Liver funstion tests) done and they are within normal limits.
Hotbread,
I renewed my journal of Multiple Sillenes things, and it seem to happen more to me when there is activity on my spine. This past couple years I have moved into the world of Primary Progressive. So there had been more commotion in the top of the spine, this attack I belive caused the sweats I experienced of late. The reason of resource was from my journal, every time I had sweats prieviously was when having a flare. But that is gone now; with the Primary Progressive. I now have symptoms variations that come and go in various combinations. I no longer have the exacerbations Relapsing - Remitting and Secondary Progressive. Actually It's quite interesting, I no longer wake with the "Am I going to have an exacerbation today." it's what draw from all my symptoms is today going to be. It's stay as healthy as possible and live long.
Hey if you get pregnate you symptoms will ease, in fact they are working on a therapy using the hormones generated in pregnancy to ease the flares.
John Hare
jdhare@q.com
Thankyou for this info John. I had spinal lesions two years ago on my MRI. Last year the lesions were completely gone which flumuxed my medical providers. Just recently I had my annual MRIs. My insurer did not authorize spine MRI - so I have no idea the current status of my spinal lesions.