Question About Sweat Test

[Maxine]

Hi----

On Monday and Tuesday I was in Cleveland. Both to see another ANS Doc who is also a neuologist, and to have ANS testing. Dr. Grubb is my ANS doctor, but Cleveland has the ability to do more testing. I'm not sure in The University of Toledo Hospital has this ability yet, and Dr. Grubb has a lot of patients, so I thought I would just get the testing done, and see him in August.

I also thought seeing a neurologist with ANS experience would be an added benefit. Well the testing didn't go well. I wasn't feeling well enough to go off my meds for the testing. I have been very sick lately because of all of the stress in our family from my mother passing away from terminal cancer, my brother's cancer, and the resent loss of my niece's baby just two days before she was to be delivered. It was just not a good time to go off my meds----------------I would end up with such a big set back, and I just can't offerd that now. So I guess the timing of the appointment wasn't good.

For quite a while now, my body has been buzzing. I'm not really sure how to explain it, but it's not a good feeling. It's feels like I have a continuous electrical current surging in my legs, elbows, wrists----and sometimes my torso. My weakness has also increased. I know it's bad when I go to Target, and I'm working on a strategy on how I'm going to get to the back of the store without feeling like I'm going to collapse.

OK-------so now I'm dealing with this buzzing-------------------most disturbing. During my sweat test they attach these capsules which has acetylcholine in them or on them to your skin. Then they send an electrical current through them to induce sweating.

WOW-----------------------for some reason my body was twitching inside!!! I didn't mind the mild discomfort at the site of the capsules, but------------Oh my god, what the heck was going on. I told them my heart was doing something weird, but the Technicians said the monitor said my heart rate was regular, but my body kept twitching, and it was very strong. The man in charge of the ANS testing lab was very kind, and came and held my hand, saying that it was my body just telling me something is wrong. I hung in there until the end of the test, but it was very bad.

" acetycholine is neurotransmitter that is a derivative of choline; released at the ends of nerve fibers in the somatic and parasympathetic nervous systems" .

The tilt table was done, and it was not conclusive. I was on my meds, and the doctor said I have to be off my meds to get the correct results. He said when I'm more stable to have Dr. Grubb order another TTT while off my meds. I'll need to be monitored though. He also ordered a lot of blood work. I never did get an explanation of what happened during the sweat test. I know it's not normal for that to happen.

Any idea's on what this could have been?

I really need your help....

Maxine :0)

[lloppyllama]

Hmm I had a sweat test done a few months back and it was not fun. I'm not sure if yours was or not but I was put in this small room that had a bunch of heaters in it (im rather clostrophobick (sp) so the small room didnt help wiht my nerves) plus it was sooooo hot omg i thought i was going to pass out!!!!

I dont know if your body was just reacting like that from being so overheated, or maybe it was an alergic reaction to the powder??? Hmm im really not sure, that is quite odd.

I hope your "buzzing" feeling goes away soon!! Good luck, you'll be in my prayers.

[goldicedance]

Maxine...You had the QSAR Test...I had it and felt similar to the way you felt.

Flop...You had the orange-purple powder sweat test where they put you in an "incubator" and when you reach a certain temp, wherever you sweat turns purple.

The QSAR Test, I found, was a lot less difficult.

Good luck with your testing.

Lois

[flop]

Hi Lois, thanks for explaining the two different tests. I personally haven't had any ANS testing other than Tilt tests although I am hoping to get some done in the future. I think it was Mary that had the powder sweat test.

Flop

[goldicedance]

I have had both tests. For me, the sweat box test was by far the worst. You were basically held captive in a box, not feeling well, having to cook to a certain temperature, and then having a camera recording it for posterity.

When I first was put in the box, I thought -- not too bad, like being on a beach. Well, that was ok for the first few minutes, and then the misery began.

As if not feeling well is enough, you have to shower and shampoo to get all the powder off. It seemed to take forever.

Finally, to add insult to injury, when you met with the doctor, he could pull up the video of you in all your splendor and glory.

Wow...that test was a real hummer!

Lois

[Maxine]

Thanks for your replies----

Lois, I couldn't believe how badly I was twitching inside my body. It was simular to what I feel when I have those spells with my heart-------------In fact I swore to them my heart was flipping out. Not really tachy, just flopping all around in my chest, but apparently that is not what it was. They were looking at the monitor that I was hooked up to. I was put on the tilt table first, and they did the Valsalva maneuver first, then the sweat test.

http://en.wikipedia.org/wiki/Valsalva_maneuver

Anyway, I know I'm not crazy. Sure I had "white coat syndrome"------basically I was over stimulated to begin with, so my heart rate hung around 110 bpm. I guess it went up 30 bpm during the TTT, but it didn't go back down when tilted back.

He said it was not conclusive, and it needs to be done again without my meds. WELL----the way I feel right now, I feel it would kill me. Not really, but that is how bad I feel. The WEAKNESS is the worst. Sometimes I just feel like I'm going to fall on the floor, and someone needs to scoop me up and lay me down somewhere. Lately, when I have these spells, I end up having these tremors in my legs, and tremors inside my body. I know when this happens, it's bad news.

When I have "white coat" syndrome I just get higher then My normal BP, and my heart rate increases, and I get a bit rigid.

I know this had nothing to do with whatever that was going on inside my body.

I guess I'm just tired of this weird stuff going on with my body, and it's the big mystery of all time. My loop recorder doesn't catch them either. Obviously something else near my heart is twitching away--------------------it just got a lot worse during the sweat test. I feel like my wiring is all screwed up.

Maxine :0)

[Maxine]

By the way------------my sweat test results were "normal".

I don't know how that can be when I can only go out on an 85 degree day for a minute or two or I get awful symptoms. If I stay in the heat I will become completely disoriented, and non-functional------------------the weakness I'll get is so bad I get out of breath walking 50 feet.

Forget about going in the sun. It's out of the question for me now.

Maxine :0)

[doctorguest]

"Normal tests" are always a good thing; even though it may not explain the situation, it certainly helps to exclude "known" causes and conditions. Sweat test is not a measure or a correlate of one's ability to withstand heat, but rather a marker of function of one component of the autonomic nervous system, called sudomotor system. In those with abnormal sweat test, there may be evidence of partial autonomic neuropathy as the cause of POTS. Hope this info helps you!

[Maxine]

Yes, that would be a good thing to rule out. Autonomic Neuropathy is definately not something I want to add to my mixture of problems--- Thanks for helping me understand what the test is actually for doctorguest.

I still wonder why it felt like my organs were flopping around. I almost jumped off the tilt table, as I thought my heart was flipping out, but the gentleman running the testing assured me the monitor said my HR was at a regular rhythm. He was very kind, and held my hand until the test was over, as this twitching continued on until about the last minute of the test.

I'm always getting some kind of twitching somewhere on my body, sometimes large muscle groups, and some are internal. However, the twitching during this sweat test was very strong-----and very scary.

Maxine :0)

[DSM3KIDZ]

I have Autonomic Neuropathy I guess because I failed the sweat test. I was dry as a bone but I can tolerate heat pretty good considering all that's going on with my body.

Dayna

[cardiactec]

I failed to sweat over my right leg and left arm -- so they called it "nonspecific" for small fiber neuropathy. gotta LOVE the "nonspecific" findings!!

I think the sweat test ITSELF is a "nonspecific" type testing and is more conclusive when used with more substantially based, more reliable tests. I was told my dr.low that they check for autonomic neuropathy with several tests together, and not simply based off of JUST the sweat test -- because it tends to be more inconclusive and "nonspecific".

[Sunfish]

maxine et al -

doctorguest beat me to it, but i was going to say something similar....that a sweat test (of either type) isn't intended to quantify tolerance to heat but rather to quantify neuropathy or nerve damage/ involvement, etc. there are many medical conditions wherein people have issues tolerating heat and only some are neurological. obviously major problems with sweating can contribute to heat intolerance but it's not the only factor.

i also have had both tests...the powder version once & the QSART twice. i agree that the powder version was MUCH worse. it was quite miserable in fact. i've had very abnormal results from all of the test though, i.e. my extremities don't sweat at all anymore. might sound like an okay thing but it's really not good b/c when the body needs to cool off & can't it's less than pleasant.

i have gone off meds for testing multiple times. it is very difficult, uncomfortable, etc but is necessary to get good test results. i've also had some testing with medications but this has a different objective...essentially testing what difference the meds make compared to baseline/ non-med results. even with meds i'm a mess but for me it's the difference between being able to at least sit up for short periods & use a bathroom versus being bedridden.

hope you've come out of the stress of the testing/ travel & the bug you've been fighting okay...

melissa

[Maxine]

Thanks again for the replies and help-----

Sunfish, I'm under so much stress emotionally right now, and have been on beta blockers so long--(17 years), that I was very worried about going off my meds at this time. Dr. Grubb knows I have POTS based on the symptoms I have had for years. However, it was the other ANS testing other then the TTT that I wanted to have done. I still need to do the blood work which will be done in the next couple of days.

I'm also being checked for mitochondrial disease. http://en.wikipedia.org/wiki/Mitochondrial_disease

I have myelopathy, and maybe he is checking to make sure it's not related to some kind of mitochondrial problem.

My muscle strength is not great lately, and I experience a lot of leg weakness when trying to walk or climb steps-----even going down steps. Basically, I have weakness all over, and at times this can be very limiting, especially if you combine it with my OI symptoms, and the pain I experience every day from the spine issues and EDS.

Maxine :0)