What neurological autoimmune disease causes night sweats (just legs)?

Posted by vball91 @vball91, May 23 11:19am

Background: I have an unknown autoimmune neurological disorder that affects the my cerebellum. I’ve been to Mayo, and my working diagnosis is autoimmune cerebellar ataxia. But that doesn’t tell me what exactly is the autoimmune cause. I test negative for all known antibodies.

Anyway, a newer symptom is night sweats, but only on my legs. I wake up 3-5 times a night with my legs drenched in sweat. Could that be because of an autoimmune neurological disease? I’m just waiting for that missing puzzle piece that will cause doctors to say, “ah! You have XYZ.”

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It is likely caused by autonomic nervous system dysfunction which can
be found with autoimmunity. There are two sweat tests that were done
when I had work up. The QSART and Thermal sweat test help delineated what
type of dysfunction either peripheral or central nervous system involved.
Try contacting your consultant on the clinic portal to add this development and its relevance to your condition. I’m not sure what treatment suggestions
they have.

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I have really bad night sweats as well. Drenching is an understatement. Been through the thermal sweat test which wasnt much fun. No answers for me. I change my clothes 2 or 3 times a night and its pretty tough. I feel for you on that one!! I have something going on and no answers is extremely frustrating. Lymph nodes in armpits were 3cm when the did a biopsy. No malignancy, no infection, no bacteria. Reactive Lymph nodes. Keep me posted if you dont mind as I will keep you posted if I figure anything out

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I’m so sorry you are going thru all this. Are you on any medications? Some medications can cause weird symptoms.

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Not sure if this is helpful but starting in March, I got sick. I thought maybe some virus going around affecting my Lupus. One of the strange symptoms I’ve never had with any flare was night sweats for 6 weeks with daily fevers along with severe hip pain, bad headaches & more symptoms even on Advil round the clock. 2 different ER visits couldn’t figure it out. Then my husband took me to the ER at Mayo. Thankfully they admitted me assuring me they would keep me until they figured out what was wrong. I had a CRP of 266 & sed rate of 78. Fast forward, it ended up I had a new autoimmune disease: Giant Cell Arteritis or Temporal Arteritis. And it is powerful! Had surgery to do biopsies on the temporal arteries to confirm. After 3 weeks s with lots of testing for other organ involvement, treatment with high doses of steroids I am now home recovering & all my tests lately show marked improvement in inflammatory response. So grateful!
But my night sweats stopped when the inflammation started getting better. Have you had your inflammatory numbers checked lately? Just a thought. Maybe your Dr. or hopefully you have a good rheumatologist, can shed more light on that.
Hope this is a little helpful!

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Profile picture for livininthestix @livininthestix

I have really bad night sweats as well. Drenching is an understatement. Been through the thermal sweat test which wasnt much fun. No answers for me. I change my clothes 2 or 3 times a night and its pretty tough. I feel for you on that one!! I have something going on and no answers is extremely frustrating. Lymph nodes in armpits were 3cm when the did a biopsy. No malignancy, no infection, no bacteria. Reactive Lymph nodes. Keep me posted if you dont mind as I will keep you posted if I figure anything out

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@livininthestix no answers are the worst. I’ll keep you posted if I find anything out!

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Profile picture for stauggroomer35 @stauggroomer35

I’m so sorry you are going thru all this. Are you on any medications? Some medications can cause weird symptoms.

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@stauggroomer35 yes, I’m on lots of medications, mostly for depression. But I’ve been on them for 10+ years and this just started. Thanks for your reply.

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Profile picture for momac59 @momac59

Not sure if this is helpful but starting in March, I got sick. I thought maybe some virus going around affecting my Lupus. One of the strange symptoms I’ve never had with any flare was night sweats for 6 weeks with daily fevers along with severe hip pain, bad headaches & more symptoms even on Advil round the clock. 2 different ER visits couldn’t figure it out. Then my husband took me to the ER at Mayo. Thankfully they admitted me assuring me they would keep me until they figured out what was wrong. I had a CRP of 266 & sed rate of 78. Fast forward, it ended up I had a new autoimmune disease: Giant Cell Arteritis or Temporal Arteritis. And it is powerful! Had surgery to do biopsies on the temporal arteries to confirm. After 3 weeks s with lots of testing for other organ involvement, treatment with high doses of steroids I am now home recovering & all my tests lately show marked improvement in inflammatory response. So grateful!
But my night sweats stopped when the inflammation started getting better. Have you had your inflammatory numbers checked lately? Just a thought. Maybe your Dr. or hopefully you have a good rheumatologist, can shed more light on that.
Hope this is a little helpful!

Jump to this post

@momac59 very helpful, thank you! I’m sorry you’re going through this but glad you finally found an answer. I’ve never heard of that condition/disease!

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Profile picture for vball91 @vball91

@momac59 very helpful, thank you! I’m sorry you’re going through this but glad you finally found an answer. I’ve never heard of that condition/disease!

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@vball91 Thanks!
Either did I. After 30 years of having Lupus - I am 67, I thought I’d heard about a lot of those autoimmune diseases. And this one kinda pushed Lupus aside & wanted to be the big star of the show. HA! I’m just very grateful I didn’t stroke out or lose my sight which can easily happen. It is a form of Vasculitis that can affect your body anywhere but especially in the head in the temporal region. I had real troubles with my left eye but it’s getting better & Mayo Opthamologist will see if they have to do surgery to preserve vision once aim tapered way down on Prednisone.
I love Mayo Clinic for everything they did & are continuing to do for me!

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Profile picture for vball91 @vball91

@stauggroomer35 yes, I’m on lots of medications, mostly for depression. But I’ve been on them for 10+ years and this just started. Thanks for your reply.

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@vball91 I have Raynaud’s phenomenon secondary in which you just have to wait to see what is causing it. I have been checked for everything they can think of and they still don’t know what’s causing it. With any medications you can have a reaction even several years later. Especially depression medications. One depression medication which helped my Raynauds but after 2 years made me a raging u know what. I was on a different one for 3 years and suddenly my liver enzymes went up. I was on a statin for 7 years and never had an issue and then started having serious pains in my legs from muscle cramps. Now I can’t take any statin. Which the strain was to help with the circulation. I’m on high blood pressure medication which I’ve been on for 6 years at 2.5 mg and when they changed it to 5 mg I started having nightmares and more tingling and pins and needles feeling in my toes. That one I just kept going with it and eventually that leveled out.

Not saying that’s what it is but maybe look into your medications just to take those off the list of what’s causing it. There is even a break down of rare side effects for them. Especially since any medication especially depression medications alter your brain, hormones, nerves, etc. I do hope you find the answers you’re looking for and I pray someone will be able to help you have less pain.

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Good point. I will look into it. Thank you!

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