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739070 tn?1338603402

MS and autonomic dysfunction

How often does autonomic dysfunction occur in MS and can it improve after the relapse that set it off?
Best Answer
333672 tn?1273792789
I'm sorry you're going through such unpleasant effects of MS and I hope it does go away. If only I had a magic wand…

I have the problem with being too cold all the time. I am always the one with a heavy coat or sweater. I know people with MS aren't supposed to do this, but I'm always turning up the heat in the shower. I didn't use to be this way. Plus the cold hands and feet, which may be a failure of the ANS to regulate the dilation of the blood vessels in the extremities.

I got a book called "Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation" from the library. It has a chapter on autonomic disorders by Benjamin H. Eidelman. Eidelman argues that ANS problems in MS are underappreciated because they are often "insidious and subtle in nature" compared to the more blatant symptoms like motor or balance problems. They aren't really looked for in the typical neuro exam. All the time gets used up on more in your-face-problems.

He discusses the following areas:

BLOOD PRESSURE CONTROL

"An important feature of autonomic failure is orthostatic hypotension [or postural hypotension, where your blood pressure drops abruptly when you stand up or change posture], which results in wide-ranging symptoms. Patients may describe dizziness, lightheadedness, or syncope [fainting] when adopting a sitting or standing position."

CUTANEOUS VASOMOTOR FUNCTION

This seems to mean impaired control of the blood vessels serving the skin and can lead to altered skin appearance, such as changes in color or temperature changes where the skin feels hot or cold. He says the neuro should also ask about "changes in skin texture, development of indolent ulcers, and disturbances of hair and nail growth."

SUDOMOTOR FUNCTION

ANS dysfunction can lead to little or no sweating.

TEMPERATURE REGULATION

The hypothalamus, centers in the brainstem, and descending pathways in the spinal cord are important for maintaining normal body temperature.

" Thermoregulation is a finely controlled function, which in essence requires a balance between heat production and heat loss. Temperature regulation essentially is controlled by the hypothalamus and other components of the ANS, but metabolic and endocrine responses also play a role in thermoregulation. Temperature homeostasis thus relies on a central control mechanism affected by the hypothalamus and the AND and a peripheral system where heat is generated or lost. Skeletal-muscle activity is a major source of heat production. Heat is dissipated to the environment by cutaneous vasodilation, and this can be increased by sweating, which promotes heat loss by evaporation. In MS, both the central control mechanism, namely, the hypothalamus and its autonomic components, and the peripheral components may be defective. Multiple sclerosis patients are thus at risk for the development of both hypothermia and hyperthermia."

BLADDER FUNCTION

"Disturbances may include detrusor instability, resulting in marked frequency and urgency of micturition, as well as detrusor-external sphincter dyssynergia, which may affect the ability to adequately void. Sphincter control may be impaired, resulting in incontinence."

SEXUAL FUNCTION

"Erectile function is under control of the ANS and thus may be a symptom of disturbed ANS function."

BOWEL FUNCTION

"The gastrointestinal tract is innervated by autonomic nerves, and the ANS plays an important role in maintaining normal gastrointestinal function." MS can mess up your bowel function. It usually leads to severe constipation, but can also cause diarrhea. "The upper portion of the gastrointestinal tract may be involved and gastroparesis may occur, presenting as anorexia, bloating, nausea, and vomiting. Loss of secretomotor function may result in decreased saliva production presenting as dryness of the mouth."

OCULAR FUNCTION

Dysfunction of the ANS can cause problems with the lacrimal glands that keep the eyes moist, thus leading to dry eyes. There can be other eye problems. For example, "pupil reactions may be disturbed, giving rise to photophobia, glare intolerance, and impairment of focusing."

He discusses things that neuros should look for on the exam and things they should ask patients about. He also talks about lab testing for ANS problems.

Not sure how helpful this is, but I thought the point that neuros aren't usually actively looking for autonomic problems might help explain the perception that autonomic problems are so uncommon. Plus neuros and other outsiders can't see ANS problems.. You should be able to see some of this chapter on google books at http://books.google.com/books?id=iUt_BdDDBHoC.

Some other info that may be of use if you haven't seen it:

"The hypothalamus controls autonomic functions, temperature, sleep, and sexual activity. Cortical, brainstem, and spinal cord plaques often interrupt the sympathetic nervous system. This causes slow colonic transit, bladder hyperreflexia, and sexual dysfunction. Less-recognized phenomena from sympathetic nervous system disruption are vasomotor dysregulation (cold, purple feet), cardiovascular changes (orthostatic changes in blood pressure, blood pressure response to straining, and poor variation of the EKG R-R interval on Valsalva maneuver, possibly increasing risk of surgery), poor pilocarpine-induced sweating, poor sympathetic skin responses—especially in progressive multiple sclerosis (Karaszewski et al 1990; Acevedo et al 2000), pupillary abnormalities, and possibly fatigue. Rarely, plaques in brainstem autonomic pathways cause atrial fibrillation or neurogenic pulmonary edema, sometimes preceded by multiple sclerosis lesion-induced cardiomyopathy. Cold hands and feet often precede the diagnosis of multiple sclerosis, raising the possibility that undetected spinal cord lesions have already affected the autonomic nervous system.

"Sixty percent of patients have pupillary reactions that are abnormal in rate and degree of constriction (de Seze et al 2001). Pupillary defects do not correlate with visual-evoked potentials or history of optic neuritis.

"Autonomic dysfunction does correlate with axonal loss and spinal cord atrophy, yet not with cord MRI lesions. It is possible that plaques in the insular cortex, hypothalamus, and cord all disrupt sympathetic pathways. Parasympathetic and sympathetic dysfunction correlates with duration of multiple sclerosis, but not with disability (Gunal et al 2002). Parasympathetic dysfunction (eg, heart rate variation with respiration, abnormal pupillary reactions) is most pronounced in primary progressive disease. Sympathetic dysfunction can worsen during exacerbations. It is tied to dysregulated immunity (Flachenecker et al 2001); worse autoimmune disease in animal models and worse multiple sclerosis (Karaszewski et al 1991); less response to the beta-adrenergic agonist, isoproterenol (Giorelli et al 2004); and conversion to progressive multiple sclerosis…"

http://www.medmerits.com/index.php/article/multiple_sclerosis/P2

sho
25 Responses
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710547 tn?1295446030
Hi - I too have multiple ANSD - temp, and bp are crazy! I have sudden flushing, like hot flashes - but they are definitely NOT that. It's very difficult to evaluate these issues. Postural hypotension is one they can test, but most occur so intermittently and can be caused by so many different things, that it's almost impossible to test for.

Empirical drug treatment is really the first line protocol. Finding a med that helps more than it hurts though, is a long shot. I've had hot flashes and sudden sweating for years. It's debilitating. Yet nothing has helped. I do have Raynauds - and now that the temps have dropped it's awful! But that's due to Systemic Sclerosis. The antithesis of that - Erythromelalgia - makes my feet get hot, red, swollen and itchy like crazy. It's awful! But I don't attribute them to MS. They're vascular issues.

I wish all of you suffering from these issues well. And if you find answers - please share!!!! Blessings, Jan

Helpful - 0
5206664 tn?1365112476
I'm never hungry anymore, I thought having no appetite was AS problems
My hands and feet have always been ice cold
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Avatar universal
I find this interesting, recently hearing about the relationship of autonomic system and "MS symptoms.  I do  have my share. I have been told I have primary progressive MS.
My hands and feet are usually always cold  and do turn purple. One Dr said I had Reynaud's ,but the AS explanation makes sense. But I find when the outside temp gets hot, my feet then get hot and edematous, then turn red from purple and are uncomfortable.
I am intolerant of humidity more then heat but the heat does make it difficult and can't handle the sun beating down directly on my head.  I get cold when I get fatigued, once I take a nap, I am not cold.
I recently read a article on trying to address the autonomic issue, I can't find it now, think it was on FB. I believe they were looking at something to treat it.
Helpful - 0
1475492 tn?1332884167
During my worst flare I had issues with maintaining my body heat and bp. It lasted the worst of the flare and eventually did get better.  

I did not keep track of the time frame as I really felt I was in a full system meltdown. The flare hit multiple areas.  

I am dx RRMS.
Helpful - 0
Avatar universal
Hi Ren, Im very intersted in this and am on a fact finding mission too. I have been dealing with ms symptoms now for just under 5 years and in the past year have had an increase of autonomic problems. Wish I knew how to deal with them all, doctors dont seem to be able to help.    
Helpful - 0
Avatar universal
Hi all, so relieving to see people dealing with this in such high spirits and support..being newly diagnosed this cheered me up no end...@hibblesi totally agree with what you have experienced ,i have also spent years with various problems with muscle weakness and a rapid heart rate and was even refer erred to the mental health team! As the doctors could not find a problem
Helpful - 0
1831849 tn?1383228392
BLOOD PRESSURE CONTROL

"An important feature of autonomic failure is orthostatic hypotension [or postural hypotension, where your blood pressure drops abruptly when you stand up or change posture], which results in wide-ranging symptoms. Patients may describe dizziness, lightheadedness, or syncope [fainting] when adopting a sitting or standing position."

This is #1 on my personal Autonomic Dysfunction Hit Parade :-)

Kyle
Helpful - 0
739070 tn?1338603402
Dear Sho,

Thank you for all your research (and citations!). !!  I found some of this info and some aI learned in school but you have found some very specific examples of the problems I am facing. I plan on presenting this information to my doctors, especially some of the finer points you quoted.

I appreciate this so much!  You are great at what you do!

Many thanks,
Ren

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352007 tn?1372857881
Love the quote you made, "my body forgot to read the anatomy books"  perhaps too, "my body forgot to read the physiology books". LOL

Here's to low B/Ps and low HRs!

As you know, Im not diagnosed with MS, but as you're aware, my HR goes in the 30's and 80's/30's too.  But it is not consistent like for a month, but only lasts for a few days, the longest has been about 6 to 7.  You feel very weak, unable to stand type deal.  It *****.  

My heart goes out to you with this issue for I can at least say I know what it feels like with HRs and B/P's too low.

I wish you could catch a break with all this stuff going on.  Although, it is good you have a great sense of humor which your body did take classes in to tolerate this crap! LOL!

Lots of love and hugs

Lisa
Helpful - 0
4848471 tn?1372238752
I've struggled with a fast heart rate, blood pressure fluctuations, chest pain, etc, since I was fourteen or so. I would wager a guess that is when the MS actually began.
I cannot express how much suffering I have undergone since this started. No one understood what was going on, many doctors thought I was a hypochondriac for having issues they could not pinpoint as a teenager.I remember crying for hours without ceasing, knowing that I needed a wheelchair because of my erratic heart rate.I remember all the days I refused to do things because I could barely sit up.My weight also fell drastically because my heart rate would go through the roof when I dared to eat more than the bare minumum.However, all of my heart tests were fine.
This aspect of the disease desperately needs attention.Dysautonomia, in and of itself, NEEDS more recognition.
Helpful - 0
739070 tn?1338603402
Why yes!!!! It's my favorite response from all of my docs...NOT!!!!!  My OB-GYN once told me that my body forgot to read the anatomy books.

From your comment, I suppose you've heard the same response before. Why can't they just say, "I don't know, here's your money back for your visits and time lost from work since I can't figure out what's wrong with you.'

Plenty of other businesses have a money-back guarantee. Why not docs ????? Just wondering...........;-D,
Helpful - 0
751951 tn?1406632863
ren, don't you just love it when your docs tell you how unique and special you are?
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198419 tn?1360242356
This link brings you to the study that is cited as 5

http://www.docstoc.com/docs/20979026/Autonomic-nervous-system-dysfunction-in-multiple-sclerosis-patients

You can download this once it loads, but I didn't want to sign-in to grab the pdf. Least you can read it, only 4 pages
Helpful - 0
198419 tn?1360242356
Maybe they think it's rare because it's so underreported? Surely the literature and study seems to be scarce.

Think all who are dealing with this will find this informative.
http://www.hindawi.com/journals/ad/2011/803841/
Helpful - 0
739070 tn?1338603402
To Beema and Ess,
I, too, have a broken thermostat. Usually I am cold no matter what the room temperature is but recently, with the cardio onset, I have the sweating issue now as well. Miserable is the best adjective I can think of.

I also have urination and GI issues as well , all tied to the vagal nerve and it's dysfunction in my body.

@Beema - I did  research baroreceptor failure and found that is just one piece of my body's puzzle. Thanks for the suggestion as it is spot on.

@JJ- Thank you for the wonderful link!!!! I don't know how I missed this wonderful article!!! It is literally my life described on paper. I plan on presenting all of my docs a copy of this research collected.

Thanks to all of you for chiming in and making me feel less of an abnormality,lol. My docs keep saying it's so rare yet here on the forum it appears to be different. Actually, the literature does say it is a rare occurrence in MS. Perhaps because we have a concentrated group of MS sufferers it seems more common.

Best,
Ren
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
You'd think autonomic dysfunctions would be more commonly seen by MS specialists, especially considering gastrointestinal issues of MSers being so common within the community, though not sure cardio issues are as common but i thought it was still quite recognised in MS. I did find this comment interesting

"The most common autonomic symptoms in MS are disorders of micturation, impotence, sudomotor and gastrointestinal disturbances, orthostatic intolerance as well as sleep disorders. " published in the neurology journal 2006

Not sure if you've read this 20011 article called "Autonomic disorders in Multiple Sclerosis"  http://www.hindawi.com/journals/ad/2011/803841/ only bringing it to your attention because it specifically discusses both the issues you've mentioned and might lead to more info :o)

I do find autonomic dysfunctions to be fascinating but a tad confusing, i have more than a few but thankfully none as scary as whats going on with your heart. I'm "tootling along" as my son like to say, if you do ever get your hands on an answer, please let us know!

HUGS...........JJ
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Avatar universal
My autonomic dysfunction comes in the form of inability to regulate my body temperature properly. What feels normal to most people is horribly hot to me, and my heat tolerance has gone way down.

This is not the same as a bad reaction to heat that many MSers experience. It's not a question of symptoms being worse when I'm out in hot weather and then getting back to relative normal after cooling down. For me, it can be like a continuing hot flash, with sweat pouring off and all that attractive stuff. I used to be a winter hater, but now it's the only time I'm comfortable. I like afternoon temps in the 50s and low 60s--after that I'm too hot.

I would say I'm 'overheated' pretty much all the time, and as I look back, it's been that way for a good 4 or 5 years, gradually getting worse, so that part doesn't go away for me.

I do have intermittent problems with urination, at least part of which must be autonomic, and others here have malfunctioning peristalsis. If this kind of thing really doesn't qualify as autonomic, I hope someone more knowledgable will correct me. But for me and for others, these symptoms do remit, so there's comfort in that.

ess
Helpful - 0
Avatar universal
Ren
I have ms and autonomic dysfunction. Its hell.  Research baroreceptor failure. There's some interesting stuff in there. Might be helpful to you.
I am told this is secondary to ms and the best we can do is try to control symptoms as best we can. My bp is all over the place. It can range from 200/110 to 80/40 all in one day. It's scary and frustrating.  My thermastat is broken it seems. I get unexplained adrenaline dumps that are horrible.  Mornings are worst for me. I have no answers really but you aren't alone in this. Try to find a good electrophysiologist and neurologist that will work with you.
Beema
Helpful - 0
739070 tn?1338603402
@JJ _ I've read that an dozens of other articles. I know I have brainstem lesions and corpus callosum lesions but with my last relapse in October no new MRI was done since I had just had one done 3 weeks earlier with no really new findings.

My cardiologist has dealt with a few cases of this as has my gastro when it hit my intestines. I was admitted to ICU for a pulse in the 30s and a BP of 80/42. Prior to the new lesion(S) whereever they may be, I was extremely hypertensive. Have had hypertension since my 20s, now hypotension.

Taking meds to cause hypertension now and it's not fun. Constant headache, yadda, yadda, yadda. Seeing another cardio, an electrophysiologist in 2 weeks. Managed to talk my way out of anohter hospital stay last week.

This autonomic dysfunction is the absolute pits. Was told by cardio and gastro that it is similar to what long term diabetics deal with. So, they do have SOME experience with it but not with MS as the cause.

My neuros both tell me they haven't seen many cases of this in their practices. Yipee! Sorry for the sarcasm, just  want an answer to this new misery. I've dealt with the other symptoms with the stiffest upper lip I could but this one is tough.

Thank you for the support! To Doni and Laurie, my sympathies to you . Please share any and all tips you have on this with me and I will be forever grateful!!! I hope your conditions stay stable as well.

@Laurie- good news you have improved! Gives me hope.

@Doni - I miss talking to you as well. Hope things are going well in your life!

Thanks to all,
Ren
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987762 tn?1671273328
COMMUNITY LEADER
Hey Ren,

I've tried to find the stats on the first part of your question and not had any luck so far at finding anything specifically for MS.

For the second part of your question, it seems reasonable to presume that autonomic dysfunction can potentially behave like any other sx can, but 'some' autonomic dysfunctions can also be side effects so its worth keeping that in mind as also being possible.

I thought autonomic functions was also connected to the hypothalamus "The hypothalamus plays a key role in regulating autonomic function" [see
Central Regulation of Autonomic Functions by Ida J. Llewellyn-Smith and Anthony J. M. Verberne published 2011] so a lesion in that area of the brain could potentially cause autonomic dysfunctions that resolve after rewiring etc.

Cheers..........JJ    
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3986919 tn?1352125983
Oh I forgot to mention....with me anyway....the sweating attacks have completely gone away...I HOPE FOR GOOD!, Also the extreme hot and cold intolerance has gone back to 'my' normal.... my blood pressure and heart rate are more consistant now...(I have been taking BP meds for sometime, but when I had that relapse....the meds didn't seem to be doing anything.

So for me....yes....I am doing much better with the autonomic symptoms.
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3986919 tn?1352125983
When I was having a relapse that peaked in Sept...my heart rate and blood pressure were all over the place. I also had severe sweating attacks, dizziness, and loss of balance. I was extremely hot and cold intolerant. Plus other symptoms...I was miserable for 3+ months.I have brain stem lesions only. Also my bladder and bowels were effected

At the time I had no idea that MS can cause autonomic symptoms, since then, I have learned that brain stem lesions can cause all kind of symptoms like mine and more.

I don't know if lesions in other places, like the brain and spinal cord, can do the same thing...I just know about the brainstem lesions.....had to learn the hard way! ;)

Laurie :)

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1168718 tn?1464983535
I hope that you guys both can come up with the answers.  Ren, I am so very sorry that you are having to deal with yet more issues and this damn disease.  Please take care,  and call, I am home.
((HUGS)))
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Avatar universal
Hey Ren,  
I questioned this too, even though I still haven't gotten my MS dx.  I struggle with high bp now and heart rhythm problems.  Everything I've read mentions these problems as related to MS, but there haven't been any in depth studies.

They do say that spinal cord lesions are the culprit and we both have those!!

I hope you are doing okay, I miss talking to you.

L, H & P
doni
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