MS and now Dx w/Autonomic Dysfunction

[NanaRx6]

One day about 6 years ago I started sweating profusely from head to toe. Sweat literally just poured down my face. I was Dx with MS in 2000, but had been seeking answers since late 1980's. In 1993 I was Dx with Fibromyalgia. Of course back then many people assumed it was for hypochondriacs or just lazy people looking for sympathy. YEAH, LIVE IN MY BODY!!!!! But, my Dr, whom I worked for, was very serious, knew my work ethics and saw me coming to work every day, sick, but putting on a smile to help our Pts. I worked 40-60 hours a week, raised two sons, was active in their school and extracurricular activities. Fast forward to August of 2015 I was hospitalized for 8 days and now given a Dx of Autonomic Dysfunction by the Cardiologist, Urologist and PCP. My Neuro was not available since he had just had surgery and not on staff at the hospital I was in. I refused the Neuro on staff there as he is a quack!!!!. I'm sorry for a long and somewhat convoluted post. But I just want to know if others have this Autonomic Dysfunction secondary to MS. the great thing, during my hospital stay the sweating stopped, and now I am constantly cold!!! I'm just trying to get as much info from those of us that deal with this!!! Of course I'm in constant pain, mostly in the shoulders, neck, low back and both thighs feel like they have vice grips on them that just continues to tighten!!! My fatigue level is at the lowest ever, even though I no longer work, I'm remarried to a wonderful man that does all he can for me, even though he has severe health issues also. Which are related to his 20 years in the US Army. Any help or ideas would be greatly appreciated.. Thank you

[HVAC]

I am wondering with or with out a diagnosis why no one is addressing your symptoms like pain. There are two kinds of pain in MS nerve pain and muscle spasms. There are medications for both. My MS Specialist sent me to a pain clinic which has been the best thing ever. They waited for my diagnosis to treat my symptoms which is unnecessary. I am on Zanaflex for muscle spasms. I was on Trileptal for nerve pain and Lyrica. The sad thing is people can be on these before they are diagnosed they do not change the diagnosis. People suffer needlessly.

On top of the MS I have terminal ovarian cancer so the pain clinic helps me with that. MS doe not exclude us from other conditions. I have learned to live with both and am happy. I like my life.

Alex

[tj3762]

Hi, Sorry to hear you are having this, too.  
I am still undiagnosed and just today I posted an additional issue I have with bladder dysfunction.

When I just saw your post, I was floored because I have this too I believe.  Mine started about 1 1/2 years ago, after getting over a cold and then I thought I had the flu.  My body would heat up like a furnace, my face would turn red in almost a butterfly rash appearance and then I would be COLD.  Now, my face has been left "almost stained" with this underlying red flush, which is embarrassing for me at times, and I have to try to cover it up with extra makeup or concealer.

I went to see a rheumatologist at that time because I thought maybe I could be getting another autoimmune disease on top of MS (lupus).  All of my labs came back negative, but my Pain Management doctor told me that I could be seronegative.  My PMD also told me that I definitely could get other autoimmune diseases with my MS, I am also hypothyroid as well.

Then, over the past few years, I still get bouts now and again where I am HOT, HOT, HOT and then extremely cold.  I did my research online and found Autonomic Dysfunction to be the cause.  Sometimes, I have felt even like my "heart" has flutters or pain as well, but it usually is sporadic.

I do not know if there are any remedies for this problem, but it can be very trying at times.  I hope you feel better and unfortunately I think this is just another problem we have to deal with, with this disease.

Regards,
terri

[essdipity]

Well hello there, Nana, and welcome to the group. Autonomic dysfunctions of a number of types are fairly common in MS. We think of mobility/spasticity problems primarily when we think of MS, but that's leaving out a huge amount. Body temperature regulation is just one issue (I tend to get overheated and start to perspire profusely when everyone else is comfortable). I have also developed extreme dryness in eyes, nose and mouth, which neuros have attributed to MS. Bowel and bladder problems are also very common autonomic issues in MS. There are many others, including cardiac problems, and since those with one autoimmune disease are more likely to get others, some of which affect the autonomic nervous system, that means the possibility of still more autonomic problems.

Well all of that is to say you're not alone. There are treatments for some of these issues, so I urge you to consult with your neuro frequently. He or she may send you to some other specialist, but that's okay as long as you get relief. Help with symptoms will make your life much less arduous.

The biggest thing I recommend is to be on one of the many current treatment drugs, designed not for symptoms but for slowing the progression of the disease. The fewer attacks or lesions, the fewer life-altering symptoms.  Good luck.