Dumb Question?? Or Just Confused???

[bwstuckey57]

I feel like no one out there understands what is going on with me. I've read some of the post about how many doctors people have gone to and some are still trying to find one that will help them. I don't know how many I've seen and my husband and I just recently went to Mayo Clinic b/c of their "autonomic specialists". The initial doctor I saw (no name mentioned) did not even know anything about dysautonomia or autonomic what?, but referred me to the same doctors I had already seen down here. They reran tests that I had already had done here and they of course were all normal like they were here.

My real question(s) is "What is the thermoregulatory sweat test supposed to show them?" Does it show abnormal sweating or that you sweat? It was 29 degrees outside and 60ish in the room where they were doing the sweat test. I SWEAT NO MATTER HOW COLD OR HOT IT IS!!! It looks like I've been in the shower and didn't dry off most of the time. I have to carry around a towel with me and I am not able to stand up or "stay up" too long without getting really ill - sweating, chest pains, headache, burning stinging red rash on arms, legs, face and eventually everywhere, and mutliple other symptoms, including dizziness, shortness of breathe, some heart wave thing, weakness, inability to use muscles, brain fog, etc. Then if I keep going when I get these symptoms, I will be ill and unable to get out of bed for DAYS!!! WHEN I WENT TO THE SWEAT TEST, THE LADY MADE THE COMMENT THAT I WAS SWEATING EVEN BEFORE MY TEST. She said that she usually has to WARM people up before the test to get them to "normal temp" before they go into the sweat box. SHE TOLD ME IT WOULD BE ABOUT 35 - 45 MINUTES OR UNTIL I REACHED THE BODY TEMP. THAT WAS NEEDED. SHE HAD TO COME WIPE SWEAT OUT OF MY EYES AND EARS A FEW TIMES. SHE STOPPED THE TEST AFTER 12 MINUTES AND SAID THAT I WAS BAKED ENOUGH AND THAT SHE THINKS I SET A RECORD FOR THE SHORTEST AMOUNT OF TIME EVER ON THIS SWEAT TEST. I GOT SO SICK AFTER THAT TEST AND HAD CHILLS AND "BURNING HEAT FEVERISH FEELINGS" ALL AFTERNOON AND EVENING AND NIGHT. IT FELT LIKE I HAD FOUGHT A WAR AND MY WHOLE BODY, ESPECIALLY MY LEGS (FROM THRASHING AROUND) HURT SO BAD LIKE YOU FEEL WHEN YOU HAVE A BAD BAD FLU. THIS IS WHAT HAPPENS TO ME WHEN I STAND UP TOO LONG LIKE TRYING TO FIX A MEAL OR CLEAN HOUSE OR SHOP FOR GROCERIES OR DO ANYTHING, SOMETIMES EVEN THE SIMPLIST THINGS. I KNOW HOW TO BRING MY SYMPTOMS ON, BUT THEY AREN'T IMMEDIATE SOMETIMES - SOMETIMES THEY ARE.. ANY BENDING AND PICKING THINGS UP AND STANDING FOR MORE THAN A FEW MINUTES (?? HAVEN'T TIMED IT).

I WAS ASKING ABOUT THE SIGNIFICANCE OF THE TEST, BECAUSE THE DOCTOR THAT KNOWS NOTHING SAID THAT THE SWEAT TEST WAS "NORMAL". WHAT DOES THAT MEAN? IF I SET A RECORD FOR THE AMOUNT OF TIME TO POUR SWEAT ALL THE BED AND THEN GOT SICK BECAUSE OF IT, HOW COULD IT BE NORMAL??? I HAD THAT TILT TABLE QSART TESTING ALSO, BUT THEY WERE LOOKING FOR THE "LOW BLOOD PRESSURE" SYMPTOM AND MINE IS THE OPPOSITE (I HAVE TO BE DIFFERENT). STRESS AND STANDING AND HEAT AND SUNLIGHT CAUSE ME MAJOR PROBLEMS. THEY DIDN'T TEST FOR THAT AND THE LEG THAT THEY DID MY QSART TEST IN IS "DAMAGED" WITH SOMETHING LIKE NEUROPATHY (I GUESS IT MUST BE SMALL FIBER NEUROPATHY OR SOMETHING - NOT THE MAJOR NERVES THAT EMG IS NORMAL). I CAN NOT FEEL THE NEEDLES GOING IN MY LEG ON THE EMG AND I COULDN'T FEEL THE IMPULSES THAT THEY WERE DOING DURING THE QSART TEST. I FELT THE ONE ON MY RIGHT FOREARM, BUT NONE OF THE ONES ON MY LEG. I DON'T THINK THAT WAS A VALID TEST BECAUSE THE NERVES DOWN THERE DON'T WORK CORRECTLY AND THAT WOULD PROBABLY INCLUDE THE NERVES THEY ARE STIMULATING TO PRODUCE THE SWEAT, RIGHT???

ANY INFORMATION OR GUIDANCE OR SUGGESTIONS YOU CAN GIVE ME REGARDING THE THERMOREGULARTORY SWEAT TEST AND THE OTHER TEST WOULD BE GREATLY APPRECIATED!!!!

THANKS SO MUCH, TIGERGIRL

[ramakentesh]

Up until recently most doctors knew nothing about POTS and told most patients that they were depressed or more likely, just anxious.

Now that it has finally become more commonly known throughout the medical field (articles in new england journal of medicine and circulation on a constant basis finally hit home) a lot of doctors seem to suddenly be experts in POTS - and will tell you all sorts of 'facts' about the condition, some based purely on their opinions and not any specific science.

Ok, they are testing your sweating to evaluate whether the nerves in these areas are suffering denervation because this has been implicated (but not proven) as a cause of POTS. THis form of POTS is presumed to be caused by an autoimmune attack on these nerves decreasing their ability to vasoconstrict.

the sweat test isnt really to evaluate your sweating itself. Excessive sweating is common in all forms of POTS - it can be caused by excessive sympathetic nervous system activity (the cause of body tremors, sweating, possibly feeling anxious, jumpy etc) - although some docs think that it may also be being caused by other things.

If it was normal this may indicate that the suspected neuropathy is minor or absent and that your pots has other causes.

Do you have pooling in your legs? Or more specifically, do they fill with blood and go blue?

[firewatcher]

"Normal" just means that you sweated all over in a normal pattern, with no areas that did not sweat. Hyperhydrosis is common with dysautonomia, but thermoregulatory problems are common with several endocrine disorders as well. Have you seen an endocrinologist?

[potsgirl]

Firewatcher,

I'm waiting for my first appointment with an endocrinologist. Can you give me some pointers on what tests I should have run? Such as my adrenal gland functioning, enzymes levels??

Thanks!

Jana

[Broken_Shell]

Hi,

I have hypohydrosis, but I had a similar reaction following the thermoregulatory sweat test. I was so sick I could barely stand up and felt as though I could die at any moment. I had to spend the rest of the day in bed. When I told the neurologist this they said it was dehydration and I shouldn't worry about it and that I should drink Pedialyte. I was appaled that they didn't seem to understand how ill going through this test made me, and I couldn't believe how viciously my body reacted to it, but I can relate to what you experienced. Sometimes I think it's difficult for others (including doctors) to understand how extreme and out of proportion our bodies react to stressors because of the dysautonomia. Hang in there!

~ Broken_Shell