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I need someone to explain this please


bamagirl
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I have blood pooling in my legs. So bad to the point that my legs turn purple and blotchy. I have had an autonomic reflex test which showed that I don't have autonomic failure or autonomic nerve damage. I have also had emg/nerve conduction studies which show no peripheral neuropathy either. My question is:

How can everything be normal and I have so many symptoms every day and feel soooo sick?

Also, my skin burns all the time, my feet are either ice cold or throbbing in pain. I just need some anwers, I guess.

thanks,

bamagirl

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I had the same problem when I first developed POTS. My arms and legs would turn bright purple, almost to the point where they were black. I made it to Mayo about 8 months later. I had the nerve conduction and sweat tests which came back normal. I was so far from normal - at the time I couldn't even walk a block. But the doctors saw my red legs in person. They acknowledged I had a "limited autonomic neuropathy". The damage wasn't strong enough to show up on the tests. In fact most of my tests, other than my initial tilt table test, have pretty much come back "normal". Fortunately, my first tilt table test was very bad and I also had some pretty rapid HRs when I was admitted overnight in the hospital. So I have an official record of something being wrong with me. I think many of us have had negative tests and that's why we have trouble getting diagnosed and people don't believe that we're actually sick...so frustrating!

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Don't you just wish you could get your time and money back when the tests come back normal and yet you know and its obvious there is something very wrong. Its nice when they say yes this odd, but if they would just come clean and say" **** if I know whats going on, you need to see Dr. so and so for some real answers, because I am obviously overpaid, undereducated and have a huge ego problem which does not allow me to admit I don't know **** about anything." I'm gonna tell one of the coats that sometime. its just a matter of time. :-)

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It seems that lots of tests come back normal, even though you know something is wrong.

It's like trying to prove to someone that your car won't start - it will always seem to start no problems once someone is there to look at it...

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I get alot of pooling in my legs and feet too.. as well as my hands and arms...

I have had a QSART test and the sweating things in my legsa re normal.. and an EMG in my legs are normal too..

the only thing funky on my QSART test was the tilt part of the test.. bp took a nose dive.. and HR went up...indicating a messed up ANS system which we allready knew I had .. soo....

I have had pooling in my legs for as long as I can remerber.. I would ask the doc about it when i was 17ish.. and younger. andthey'd say 'OH your just cold" Ok.. whatever!! I dont feel cold!!

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As alluded to above, many of us are quite ill, but have very real physical symptoms despite all the "normal" tests. It may sound crazy (and I know I'm not alone on this one) but I find myself sometimes hoping for a test to come back abnormal so I can say to the doctor "see! something's really wrong."

For me, I do have abnormal nerve function, so maybe I shouldn't have wished so hard, eh?

As for your blotchy legs w/ pooling, if you've not had the rheumetological screenings for raynaud's you might want to ask your doctor about it.

Nina

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Bamagirl-

My emg tests on my arms, hands, neck, and back muscles are normal, yet I have extreme weakness in my arms and numb/tingling fingers. My hands turn black, blue, purple, and white when cold and red and burning when they are warm. It took years for me to be diagnosed. I am on my 5th neurologist. Finally, I hit the jackpot! I have Raynaud's in my entire body (more severe in my arms and hands) and autonomic neuropathy. Autonomic neuropathy is diagnosed through a tilt table test and sweat test. Did you have these tests? My autonomic neuropathy is affecting my blood vessels and heart which can cause such symptoms. Now, I have a slow message to my atria which they cannot find the cause (Head of Cardiology). Have you had tests for peripheral neuropathy? My mother has it in her legs and feet? Maybe you should get a second opinion.

Take care,

Marie

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what is raynaud's?? i have seen it mentioned many times here on the forum...

is it an additional casue of the purple extremities?? mine get pretty purple... and cold... and my hands are often feeling like they are on fire... and when i wake up I get alot of ah..weaknessa dn heaviness in my left hadns and arms especially..not quite a sleept feeling

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I would love to know any test you guys know of that will rule out peripheral neuropathy and raynauds. I have had emg/nerve conduction studies and autoimmune blood tests-all were normal. If there are any more tests other than these that can confirm this, please let me know and I will get my doc to run them. My legs hurt and pool now more than ever.

thanks,

bamagirl

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One possible but rare cause of blood pooling in the lower extremities is thiamine deficiency: either you aren't eating enough thiamine (vitamin B1), or you aren't absorbing it and transporting it properly within the body. You can ask your doctor to test your thiamine levels or just give you a B1 shot and see if you don't feel better. If you have a thiamine deficiency, a big dose of B1 will probably make you feel better within 24 hours. There are lipid-soluble forms of thiamine for people with thiamine transport problems (e.g., diabetics and alcoholics). See www.thiasure.com

Large doses of thiamine are also used to treat mitochondrial problems. Thiamine seems to be the most helpful intervention I've tried, so maybe my problem is mitochondrial. Or maybe I drink so much saltwater that I keep flushing the water-soluble vitamins out of my system. Hard to say.

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I thought blood pooling in the extremities was just a symptom of this OI problem, ie NMH. My doc told me that mine was especially bad (feet turning deep purple) because on top of NMH I have Ehlers Danlos Syndrome.

Makes sense to me.... I thought all of us had this problem..... that it's part of the blood pressure dropping and the blackouts, because our blood all falls to our hands and feet.

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I totally understand the frustration. My legs only do that when I stand or dangle my legs over furniture like the exam table. THe legs get off colored and purpleish then they get white spots scattered over them and they are cold. At night I notice the coldness and it really aggrevates my restless legs. Sorry that you are so frustrated but ..at least you aren't alone.

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