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Avatar universal

Autonomic dysfunction in MS?

Hi everyone,

Hope you are having a good day....

Today, I went to see the new neurologist in the same practice with specialty of migraines.  He only wanted to talk about my migraines, but we did talk a little bit about my new "Autonomic Dysfunction" symptoms, but did not say anything about MS.

I started after a "flu episode" in March, after my migraines quieted down, having a marked flushed sensation on my face.  I went to PCP and he did blood work such as double stranded DNA, ANA, thyroid etc.  My thyroid was slightly low but only replaced 0.25 mcg. All other blood work negative.

After my PCP visit, I started with extreme "hot flushes" like a furnace coming on.  It was so intense, but then I would be extremely cold afterwards.  This would happen approximately at the minimum once an hour.  This has now quieted down but it went on for a month.

Now, I have noticed an extreme inability to sweat.  I probably would have to really work out or run around the block 2 times to get a little sweating.

My newest autonomic symptom is "blue feet" or Raynaud's.  This has started within the last 2 weeks and extremely concerning to me.  This new neurologist did say that it sounded like Raynaud's, but other than that said nothing.

I am thinking now that maybe I should see another neurologist in a different practice (as others have suggested here).  

I feel so discouraged after all these years.  I feel that I just keep deteriorating with new arising problems every year and still NO LESIONS on my MRIs.  

Thanks for listening,

Terri
7 Responses
Avatar universal
I'm in a major relapse, and my body's temperature gauge or thermostat has gone haywire. For all my MS years it has been off--I can be in a room full of people who are very comfortable and I'm sweating like mad, my own private rain forest.

Now it is much worse. I get rivulets of sweat running down my face and neck just sitting at my kitchen table. In the midst of all this I start shivering badly. When I adjust my home's thermostat I notice that a 3-degree change can set off sweating or freezing.

I don't have a fever or an infection. I do have lots of other stuff going on during this endless relapse. It's all MS. Or I should say, most of it's MS. I'm also being worked up for something new--Sjogrens. Nothing to do with hot and cold, plenty to do with dry eyes, nose, mouth, total lack of taste sensation. Everything tastes like cardboard, mouth feels as if it's stuffed with cotton. Just what I need, a third autoimmune condition.

ess
987762 tn?1331027953
COMMUNITY LEADER
Hi Terri,

I've got to say that you maybe looking at something other than MS here, for me the red flag would have to be the "still NO LESIONS on my MRIs". If you still have no lesions over a lot of years, normal clinical exams (clinical evidence of neurological/lesion damage) and sx's continuing and or multiplying but not specifically typical sx's etc MS would have to be lower on your possible list of causes.

I have multi coloured feet and have for years...... "OMG look at the colour of your feet, are you ok?!" became all too common from adults or "JJ, why are your feet purple?" from the kids I worked with, that I would hide my multi coloured feet just to avoid the commentary. The GP i was seeing at the time didn't think it was anything important ["possibly Raynaud's"] so neither did I. I ended up going back to my old GP, i'd taken some pictures of my multi coloured feet and took them to an appointment, and he freaked out that they had never been investigated.

Okay totally not the reaction i expected lol prompt appointment with a vascular specialist and when i pulled out the pictures on my first appointment, I got another OMG reaction and when she got a look at them in person, the assistant raced off to pull the specialist out of the procedure he was doing. 100 questions later and he's scratching his head and admitting he's never seen anything like it before, oh boy this wasn't what i expected at all and when he recommended i get every vein and artery in my body checked out via ultra sound, i didn't question the necessity, i wanted concrete answers!

hmmmmmm after having my entire venous system checked for anything abnormal, what i know for sure is that there isn't anything vascular causing  my multi coloured feet and the specialists professional opinion, after consulting with colleagues also involved in the MS venous study, reviewing my MRI with a chronic number of lesions etc..........."We don't really know but we think your brain lesions are probably causing the autonomic dysfunction."
    
I honestly think MS is probably not going to be your answer and i would recommend investigating vascular conditions because with your purple feet, it just may lead you to the alternate answer and to me it would be worth investigating.

Food for thought...........JJ  
6881121 tn?1392830788
While you had ANA done, it actually sounds as if Rheumatologist should check you out. These symptoms remind me more of Sjogrens or other lesser known rheumatic ailments, and there are more sophisticated blood tests out there to help pin things down for you..  
Best wishes!
Avatar universal
Thanks to all comments,

Essdipity, I totally agree.  My primary care physician said the same thing when I went to him.  You can have multiple autoimmune diseases develop over time.  I do the exact same thing, but I cannot sweat.  It is strange.

Thanks for your help...I knew that I was not crazy...

Terri
Avatar universal
Thanks for your input,

I have found that Raynaud's has primary and secondary causes, and it would be a secondary cause in my case.  My neuro did check my pedal pulses and they were fine, so do not think it is vascular.  I am a medical transcriptionist and I do sit a lot, which is not good.

Also, I found that autonomic dysfunction is a secondary cause as well, for example, stomach, urinary and bowel problems among the list.

I appreciate your comment.  Believe you me, I do not want this disease at all, but there was one medhelp user that did not get diagnosed until 13 years after onset of symptoms, so I believe it is possible.

I do believe you can have multiple autoimmune diseases develop at the same time, but cannot remember the medical term right now....

Thanks, again....

Terri
Avatar universal
P.S.

You take care of yourself.  I know it is a bad time of year for relapsing.

Prayers are with you...

terri
987762 tn?1331027953
COMMUNITY LEADER
Sorry i should of made a point to mention that it turned out, that I don't actually have Raynauds primary or secondary (though since childhood have a 'totally unrelated' autoimmune physical over-reaction to cold temperature) so I still don't really have any concrete answers, on what is actually causing it, I just know what isn't. lol

True you can have more than one dx'd autoimmune condition and there are a lot of us that didn't even have MS on our list of possible causation, until many many years after sx's started but I think you'll probably find that most in that situation, actually did have MRI lesions and or clinical signs and or a medical history of dx's very suggestive of MS but for various reasons their dx of MS just didn't happen.

Our health pages has a good page on alternative dx's, but there are a few red flag articles the neurologist use that might be worth reading, it's late over my side of the world but i'll try to locate something for you tomorrow. Basically the uncommon sx's and sx's unrelated to MS are often important clues in what else it could be, because sometimes it doesn't turn out to be MS but one of its mimics.

The longer you go without lesion evidence either clinical or test evidence eg MRI, OCT, LP etc etc the 'less likely' the answer would be MS, that doesn't mean it never could be MS but if the evidence isn't supportive over a number of years, the odds are its something else instead and to me it's worth investigating any crumb a person has, even if its only to cross it off their possible list!

Food for thought...........JJ

ps below is an article i think is worth reading, if you've been dx with Raynaud's primary or secondary......

http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916
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