Aa
Back from Mayo Clinic
My trip to Rochester, MN was a rough one for me. I fell in the DFW airport because they didn't get a wheelchair for me in time to get on the plane. Didn't hurt anything but my pride. It took most of the day to get there and get back, so it was long hours in the airport or on the plane.
I had 2 days of testing which I made it through but the thermoregulatory test was horrible and I never want to do that again. You strip, have small clothes to cover private areas, then sprinkled with orange powder and put in an oven. I kept calling it the Easy Bake Oven. If you sweat the orange powder will turn bright purple.They get your core body temperature to 100.4, I thought I was dying, I had to stay in that oven for 45 minutes.
I had all those tests to find out NOTHING new, I really felt like it was a wasted trip.
I had 2 days of testing which I made it through but the thermoregulatory test was horrible and I never want to do that again. You strip, have small clothes to cover private areas, then sprinkled with orange powder and put in an oven. I kept calling it the Easy Bake Oven. If you sweat the orange powder will turn bright purple.They get your core body temperature to 100.4, I thought I was dying, I had to stay in that oven for 45 minutes.
I had all those tests to find out NOTHING new, I really felt like it was a wasted trip.
That just sounds rotten. :-( I'm so sorry you didn't make any progress from this trip.
Sorry to hear you're going through this, I read about this test recently and thought I should have one done. After your description; now I'm not so sure I want to even bring up the subject.
About 14 mths ago I could handle the heat, did yard work all day long stay out in the hot summer heat of FL and loved it, I even sweated worse than a man. I was only recently dx so now I'm looking back and putting the picture together of what's been wrong. I don't exactly remember when, but I stopped sweating and said something to my husband about it and got to where I just couldn't handle being outside any longer.
I found the post about the stockings & tried it yesterday and was WARM! ahhh... have you tried the stockings or compression hose (full ones) if you can't get warm...I'm wearing them now and staying warm even though the AC is on and normally I need socks at this point of the day.
About 14 mths ago I could handle the heat, did yard work all day long stay out in the hot summer heat of FL and loved it, I even sweated worse than a man. I was only recently dx so now I'm looking back and putting the picture together of what's been wrong. I don't exactly remember when, but I stopped sweating and said something to my husband about it and got to where I just couldn't handle being outside any longer.
I found the post about the stockings & tried it yesterday and was WARM! ahhh... have you tried the stockings or compression hose (full ones) if you can't get warm...I'm wearing them now and staying warm even though the AC is on and normally I need socks at this point of the day.
I'm sorry you had to go through all of that testing only to go home without a new treatment plan. That is a constant source of anxiety for me. Certainly one that I'm sure many long-term Dysautonomia patients can understand.
I too have significant difficulty with thermoregulation. It used to be just the heat intolerance, but over the past two years I've been having to watch out for episodes of hypothermia as well. I now take my temperature multiple times each day, which seems to help me stay ahead of it.
If I may ask, what is your current treatment for PAF? Also, have you ever tried wearing a cooling vest during the summer months? I purchased one this year, and it's been a lifesaver!
I too have significant difficulty with thermoregulation. It used to be just the heat intolerance, but over the past two years I've been having to watch out for episodes of hypothermia as well. I now take my temperature multiple times each day, which seems to help me stay ahead of it.
If I may ask, what is your current treatment for PAF? Also, have you ever tried wearing a cooling vest during the summer months? I purchased one this year, and it's been a lifesaver!
I have a diagnosis, I have Pure Autonomic Failure. I have been going to Mayo yearly for testing so they can compare it to the years prior. I was just hoping for some new treatment, but in 4 years they haven't come up with anything different.
A lot of people with dysautonomia have problems with temperature control. There are some of us that our body thermostat is just broke. I'm one of those people, so I have problems all the time with my body temperature.
That is unfortunate. I'm sorry it went poorly. In a way, it is good to have some things eliminated by testing, even if nothing is found. Any information can be helpful when the hunt gets desperate. Don't give up searching. I hope closer diagnosis can be found for you soon.
I am also sorry to hear you found out nothing new. Maybe they will still help you feel a little better....I don't know. I have a question. I am currently having a problem staying hot (except for today). With this I usually do sweat, maybe not like most people do. Is there anyone that does this with dysautonomia???? Thanks and sorry to put this in now. It just kind of popped in my mind reading this post.
sorry to hear you never got any more answers and I understand how frustrated you must feel by not learning anything new. I suppose the only way to look at your trip would be to see how it has validated what you already knew.
That's too bad you went through all that with nothing new to show! Are they going to do any more testing in the future?
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