Autonomic dysfunction, Multiple Sclerosis, where does one end and the other begin?

[johnnymutt]

I have been, (for probably 6 or so months) been experiencing night sweats. Just the other day, I looked it up. Low and behold, there is a neurological link, in some cases, to that instant hot feeling I get as soon as a lay down. Needless to say, I was surprised to learn this. What surprised me more was that some of my other symptoms correlate with the very same thing that causes the night sweats.

Yep, Autonomic dysfunction. So, I've been googling the heck out of AD for the past few days, and to tell you the truth, I haven't found a whole lot of useful solid info.

I have found that there is a lot of inter-twining of MS and AD. The thing that confuses me, is what's what, and who's who. Is MS a secondary of Autonomic Dysfunction, or vise versa? Or is AD simply a label of all autonomic problems.

I would appreciate any insight to this subject.

Thanks,
John

[jenandherboys]

Really interesting stuff...I've also had the " blackout-and-almost-faint-when-standing" on and off; starting when I was a teenager.  Fast forward sumer of 2009 when I started noticing unusual episodes of mild tachycardia (heart rate about 120) which would come out of nowhere and remain for up to an hour or more.  I even went to the ER during one of the episodes, where they gave me a beta blocker(I think) which brought it back down. They found no other problems and sent me to my (old)GP for follow-up. Whe insisted it was due to my ADHD meds-even though I had episodes when I hadn't taken my meds for several days. We did a 24-hour Holter Moniter which showed no abnormalities; although I didn't have any of the strange episodes during this time frame.

Also have had frequent episodes of night sweats in the last 2-3 years, as well as the "broken internal thermostat" phenomenon. Regardless of the temp outdoors, I have periods where I'm so hot, my scalp sweats and I feel like someone wrapped a thick wool scarf around my neck.  Conversely, I sometimes get so cold that I can not warm up without hot packs around my feet and four layers of clothing-my toes turn almost purple, my fingers are white and my nose feels icy cold (Reynaud's?). Interestingly enough, during my "flares" (whatever they may be!) I have noticed the transition from too hot and sweaty to can't get warm enough.

Also have developed significant problems with dry eyes and mouth. I have been using Restasis Rx eyedrops with little success and no matter how much I drink, both problems seem to wax and wane at will-also seeming to worsen with "flare-ups" and improve afterwards.

I seems that these have all developed or worsened in just the last 2-3 years, esp. the last 12 months-which is also when my more obviously neurologic symptoms began(too many to list here).

I had also asked my neuro about the potential link between these possible autonomic symptoms and the others I was having-he said they were unrelated!

Sorry to hear so many of you suffer as well, but still relieved to find that I'm not losing my mind completely!

Good luck and be well!

Jen

[supermum_ms]

G I love these discussions, it gives me a time to let my thoughts run wild. I have long known there is something amiss but what it was called never came to light until i found you guys, so leaving the obvious MS sx aside it would still leave a few not so commonly referred to but you still find MSers talking about sx that fit into Autonomic Dysfunction.

I too dont seem to have much control over my internal heating/cooling plumbing, in summer i'm too hot, in winter i'm too cold and sometimes it gets all confused and i end up sleeping with the electric blanket on through the summer nights, it just cant make up its mind lol.

Then i have the stand up and almost faint, stand up and take a few steps and almost faint, which is the one that i hate most because i think i'm fine and oops no i'm not. I havent been able to close my eyes for a while with out falling backwards but now all i have to do is look up and i not only almost faint but also fall backwards lol.

Next but most perplexing is my veins are now abnormal, its not by a long stretch varicose veins, it looks like both the thick and little veins in my upper body are caput, lower half isnt as bad but its mucking up the blood flow through out my body. When i get hot it seems to be worse than when i'm cold, all the veins start to pop up (just to say hello) they are engorged, swollen and i hurt like i'm bruised. I blow veins in my hands, the baby finger on my left hand likes to swell so big i cant even bend the finger.

I think i'd have to be thick as a 2 by 4 to not see the connection between the 2nd and 3rd things i've mentioned. Still find it interesting to note i've also got raynaud's which is a combination of lack of blood and temp though i seem to have twisted everything up a tad lol. I cant at all work out why i havent had a heart response, in fact when i have the little tweety birds flying around my head, i'm not even aware of my heart beating at all. It doesnt ever race, even in really scary dont panic or the wild beast of a person will attack type situation it doesnt race, ooh maybe my flight or fight button is broken too lol

I suppose to simplify the connection to MS, is that when the brain is being nibbled and the wiring is on the fritz, it stands to reason that what ever the brain controls, will also go on the fritz, it doesnt really leave much wiggle room.

Its Murphy's Law my friends, what can happen, will happen!

Cheers..........JJ

[johnnymutt]

Wow, quite a bit on info to chew on here now, Thank you so much everybody! I to, have the house so cold now that I am getting "complaints" as to the temperature, hehe. I still have to have the fan right on me, even though it's freezing, not to break out in a hot sweat, while snoozing away.

I also have sleep apnea, which I wear a mask for religiously. I couldn't sleep without it period. I've been using that thing for almost 5yrs now.

Tonya, thanks for the clarity of how the two shake hands so well.
Pat, thanks for the links, of links, with links in them, lol, just teasing. Actually, the links have given me some serious good reading.
Thanks to everyone for your personal experiences with this, it most definitely helps to shed light on the matter.

Something funny about all of this (not funny haha, funny weird, as the Backyardigans would say) is that all of these issues like MS, AD, and everything that we discuss on this forum, is so hidden persay. It is like it is some underground movement of illness that the falls short of the view of the standard public. Everyone knows that there are people that are sick, but simply know absolutely nothing about all of these maddening neurological issues.

I have been educated quite a bit in the past year, as to the perils of this, and similar diseases, that you all face every dang day. By shear will alone, you all go on, without stride, and live, not just survive, life.

I hold my arms out to you all, as I would hug each and every one of you. You are my support, and my family, and I thank you all for just being you.

John

[Sarahsmom46]

That is funny 'hose on the nose". I know you were only kidding and so am I when I think about sleep apnea causing the sweating at night.  Let's see if it works. If not, then I'm going back to my lung doc to tell her she's wrong.  :)

Julie (sarahsmom)

[jujuminx]

I have trouble regulating my body temperature.  Mostly I get cold and shiver at night but sometimes it can be hot sweats too.  I usually wear lots of stuff to bed and peel off as necessary. Now with dx, thought it was related to MS but maybe not.  Doesn't really matter to me, deal with what is and adjust.

Julie

[PastorDan]

Guess maybe I need to go back to wearing the stupid hose on the nose every night.  Oh, well...

[Sarahsmom46]

You know how they tell us not to blame all our symptoms on MS.  I try to keep that in mind when something new comes up, but usually it does kinda relate to MS.  

So, I am getting night sweats too and after my recent sleep study my doctor thinks it is because of sleep apnea.  Sleep apnea, somewhat common in MS but isn't caused by MS, often causes night sweats. Go figure.  

Just another possible cause to consider.

Julie

[Eyesnlegs]

oops sorry the link to the paper is in the other discussion I have given the link to above

holes in the brain again - tee hee

[Eyesnlegs]

Great explaination, the paper I posted a link to above is an interesting in this area. The questions they asked of the subjects in the survey point to all the problems I have as I was able to answer yes toi all of them. They also measured skin responses (sweating) and that showed the connection.

My MS team are aware of the connection but I have still printed a copy of this recent paper in case they have not seen it.

This is a great discussion as it explains a lot as I too have been trying to research this area.

Pat

[tonyad]

   Perhaps I could help to clarify a bit. Yes, it is NOT uncommon to see AD in people w/ MS. I too am Dx w/ both MS and AD.  From what my Neuro, EP and a Recent Seminar I went to....It was explained to me like this:

   AD could be seen as an extension of MS.....To help understand it a bit better, They said to look at it like this;   Fatigue is an extension or part of MS as well as Optic Neuritis, Dizziness, bladder issues, cognitive issues , and so on.

   When it was explained to me like that I understood it better. Now, that is NOT to say that people CAN have AD and NOT have MS. And, on the flip side, Not everyone w/ MS will have AD (Dysautonomia).

   Hope that makes sense. AD can be dx through an EP (Tilt Test), or some Cardiologist have enough knowledge to know about AD.

Take Care, and I hope you get answers soon.
~Tonya

[Erin0313]

Hello fellow night sweat sufferer! I saw autonomic dysfunction and thought hmm that rings a bell. Could it be one of the things that I have or maybe one of the pre MS dx that I was given along the way?

Sadly with my severe cognitive decline I couldn't remember so I looked it up and here is the Wikipedia definition of Dysautonomia or Autonomic Dysfunction:

   A broad term that describes any disease or malfunction of the autonomic nervous system. This includes postural othostatic tachycardia syndrome(POTS), Vasovagal Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), Autonomic Instability and a number of lesser known disorders such as Cerebral Salt Wasting Syndrome. Dysautonomia is associated with Lyme Disease, Primary Biliary Cirrhosis, Multiple System Atrophy (Shy-drager Syndrome), Ehlers-Danlos Syndrome and Marfan Syndrome for reasons that are not fully understood.

So MamiJ has Mitral Valve Prolapse and after typing this I remember that I was dx with POTS so we both have an actual syndrome but after reading it sounds like AD is "generic" for anything going goofy with our autonomic nervous system and lets face it if we took a poll here the response for SOME SORT of goofy would probably be in the high numbers.

Hope this helped a little - at least I remember that one of the long list of things I suffer from is POTS (not the fun kind either, lol)

Hugs,
Erin :)

[RedFlame]

Hi Johnny,  that really is an interesting development.  I have night sweats that come in waves.  I won't have any for 6 months or more and then I will have several a week for a few weeks.  

The thing I worried about was Lymphoma.  I don't know how likely that is though.  

This whole area is something I struggle to understand.  All three of the subsets of the automic system act together to help the body remain in a state of homeostasis.  The Sympathic Response System has to do with 'fight or flight' and the Parasympathetic response system  works with and against the sympathetic system.  The Enteric response system is more about moving the digestive track.  

The ANS deals with heart, lung, skin, and everything else in our bodies that we can't control.  The 'goosebumps' we experience when we are cold or when we are hot is an example of the ANS.  If there is damage in our nerves, then it makes sense that parts of our bodies are not getting the right message.

Since all of this takes place in the nervous system, it would make sense that people with MS could also have Autonomic Dysfunction and vice verse.  

Hopefully someone will chime in and we will get a better understanding of the ANS and AD.  

I just wanted to let you know I with  you and hope you can sleep tonight.

Hugs,   Red

[Eyesnlegs]

I don't think we have met but I thought I would chime in anyway, AD is just another way of saying that the Autonomic Nervous System (ANS) is not functioning as it should and there have been a few discussions about this lately. Here is a link to the latest:

http://www.medhelp.org/posts/Multiple-Sclerosis/Has-anyone-had-Orthostratic-Hypotension-with-their-MS/show/1102778?personal_page_id=231101

I can tell you that I have had ANS involvement with my MS for some time and night sweats are one of them. I thought my menopause was going on forever (not your problem I'm sure lol). But the sweats had changed nature, so my MS Nurse convinced me it was MS and not menopause, I also have times when I sweat for quite some time and then go icy cold - nothing warms me up and I sit for a couple of hours under several duvets, totally exhausted and then suddenly out of the blue I go into a crazy, soaking, sweaty session again.

I am sure others will chime in here too, you have my sympathy. It is not pleasant and very anoying as it stops you having a good nights sleep.

Pat x

[lovemy6monkeys]

John,

I am interested in hearing more on this too! Like PastorDan, I seem to be overreacting to temperature changes.I joke and say my thermostat is broken. I can go from sweating to shivering in a matter of minutes. I don't get night sweats, which is good because I can't sleep if I'm too warm. My poor husband says he has icicles on his nose when he wakes up I keep the room so cool :-)

I hope you find more info!
~Jess

[mamiJ]

I was dx with dysautonomia (or AD) back in 1995. I have had night sweats off/on since 2000. I have dizziness if I stand too quickly and if I get startled, I will get the "tingle" all over for several minutes after...I also have Mitral Valve Prolapse, which often goes hand in hand with AD.

When I started having my new weird symptoms, I went searching for a dr to see if the AD could be causing all of these new problems and someone who really knows anything about
AD is hard to find!

I even had a neurologist ask me what it was and then look at me like I was making something up when I explained it.

The best dr I had for AD was a cardiologist, but he retired.

I still have not been able to get an answer if these issues are related to AD, or if I have something else.

[beema36]

I don't have an answer but I have both ms and ad and also wonder where one starts and the other begins. I am always thinking is this symptom ms.or.is it ad? Guess it doesn't matter which is which but still always have the question

[PastorDan]

I have what I feel are unusual periods of sweating, almost as if I am overreacting to moderately warm conditions, even in circumstances where the people around me don't seem to be bothered at all by the environmental conditions at the moment.  Usually getting air movement around me and water into me settle it down, and I can go on with normal activity.  No idea what this is about, or if it is even unusual in a statistical sample more broad than my unscientific personal observations.

My suspicion, John, is that AD is a broad label that includes a host of irregularities, and that most of those irregularities can show up for an assortment of reasons and in an assortment of conditions.  MS happens to be one of the reasons, one of the conditions, or both, or neither for many of us.

As Paula suggests, whatever you learn could be interesting and helpful to a number of folks here; of that I am confident.  Best wishes.

[figuerpa]

John,

Sorry I can't be of much help but I am looking forward to the answers you get on this one. For the past year I have been having night sweats too. I mentioned it to my PCP and asked if it could be menopause but she said I am too young for that so I still have no reason for the night sweats.

Hopefully someone will get you some answers because I am sure we aren't the only ones who have this problem.

Paula