I'm not sure about too many blood vessels, but I did have a dopplar done when the pooling started, and they said it came out as normal. Would that problem show up on there?

I don't see pooling anywhere else, but I suppose it could be possible.

So you think I have something more severe than POTS? I wonder how I would find out if that is true... not that it really matters, but I'm trying to get disability right now since I'm bedridden, and every diagnosis is crutial right now... I need to know exactly how bad it is so I can tell them.. they are still asking for more information and deciding on my case.

The problem is, it was at Mayo that I was diagnosed. I can't get back to Mayo to be retested, and I don't think they do those tests around here.

I'm just so frustrated that Mayo didn't bother to tell me about this--and a lot of this could have been prevented/treated early on.

No, I have no done the compression stockings. I cannot because of the PN... I can barely handle regular socks and cannot have anything touching my feet--and they said I would have to put those on over my feet and that it would be extremely painful.

One doctor gave me a cream form of whatever it is that people take when they think they are having a heart attack... nitro something or other... to open up the blood vessels and allow the blood to flow... but it didn't do anything.

Yes, that is a problem with PN, putting on anything like socks. I have to have a cast and I am really worried, since splints bug me, a lot.

If your feet are turning very purple, and you can't remain conscious, it is more than POTS. POTS is basically tachycardia due to the heart trying to compensate when a person stands, usually due to venous pooling. For some reason, especially in young women, the blood does not return as fast as it should to the heart. POTS is part of Dysautonomia, which is a name for slightly milder Autonomic Neuropathy.

The turning purple is very Raynaud like, but I am sure they thought of that.

For some reason, your veins are not pumping back the blood. Veins have valves, and these valves can become incompetent. Veins also constrict and dilate per nerve impluse. For some reason, your mechanism is not operating correctly. Mayo does a lot of diagnosing of POTS....they would have thought of that.

POTS is Postural Orthostatic Tachycardia. When I stand up, I don't get tachycardia....I get bradycardia....it may start slightly elevated, but after after a few minutes, it goes down. Hence me having something more complex than POTS. POTS would have showed on a tilt table, if I am correct, they didn't do that on you, since they already knew you would pass out? I passed out on the tilt. First you get sick, then you want to throw up then you just go pooof.

Anyway....people are looking and thinking for a solution for you.

No, I don't pass out... I just get very dizzy and combined with my neuropathy problems, have trouble not falling over. But I don't become unconscious.

They did do the tilt table test--that is how it was diagnosed, according to the medical records. They just never told me about it.

I must have misunderstood....I thought you could not remain conscious when upright. I also thought that the pooling was visible and that your feet turned purple. That would have indicated it was very profound. Perhaps it is POTS.

If it is POTS, then, medication and trying to retrain yourself to remain upright could possibly get you moving again. I was quite immobile for a while, but, forced myself to get moving and was slowly, and I mean really slowly able to get going again.

I think I was sick for a long time, but after I had a surgery with a general anesthesia, it seemed to me, that things accelerated and I spent several years really incapacitated. I am slightly better now, well, some what better and can be up for fairly long and can be active.

Sarah,
Are you still in the process of getting tested for RSD?
Take a look at 'bobinjeffmo's profile page. He posted pics
Does this look like what happens to your legs?

And since you can't handle the compression stockings, let alone the sheets touching your legs.......this really makes me wonder?
I hear the RSD folks talk in these terms and when I saw Bob's pics, i am just wondering?
:hug:

I did have the bone scan to test for RSD. I've heard it is not very accurate, though. I don't have those results yet, as the scan was just last Thursday.

The reason why I am bedridden and laying flat is because of the pooling. My legs DO turn deep purple (nearly black). When I sit or stand, the pooling starts. When my legs are elevated, it stops.

Therefore, we don't think it's RSD.. but are testing just to check. People with RSD generally (from what I've read) have the discoloration all the time, not just from pooling.

We'll see.

I just got back tonight... so I will have to look this up....in detail.

But I will say quickly that I had a bariatric patient with blood pressure issues years ago that was given midodrine (ProAmatine). (she used to faint while in a vertical position...fainting all the time)

BUT... I just read while on vacation that this drug was being withdrawn by the FDA for "ineffectiveness"... so I don't know its status today. (It has been on the "questionable list" for quite a while now).

Bariatric surgeries a fraught with awful consequences...some don't happen for everyone, but when they do happen, they destroy quality of life for those afflicted.

To understand what is going on in the extremeties?
 

Please try this site:
http://telemedicine.org/stamford.htm
First, click on from the 'Table of contents' Diabetes in Skin Disease.... then?
Read first the 'Abstract', then the 'Introduction'..then?
Read about all the 'Diabetic Neuropathies'. WHY? Don't Have Diabetes?
Because this is what is happening to your vascular and lymphatic 'systems' as well as how the 'neuropathies' are being affected due to 'SOMETHING'.
I too got a giant whomp of edema after my PN had started, turned out that my thyroid was essentially dying at the time. The swelling, and the changes in the skin and color of that skin wasn't pretty in the least.
Have any docs done basic yet, better, extensive testing on your Thyroid? That was what caused my issues, I went from hypo-T[underactive] to Hashimoto's T [autoimmune/dead] thyroid in a short period... a year after my PN had started and my feet had swollen up beyond 3 shoe sizes during that one big, bad flare. If it were me? I'd ask to see what all tests have been done? And then get copies and GET ON-LINE and LEARN! Easier said than done tho.
Can/could you try to gently hand massageing your legs from the foot/ankle upwards past the knee to help get fluid out? Worth a try... Has ANYONE given you any strength building or retaining or flexibility exercises while you've been bed-bound? It's soo hard to get up and out, once you've been 'down a while'! More you can do or keep strong now? More easily you can get and keep more later to DO! :hug::hug:'s! - j

Here is the FDA article about ProAmatine:

http://www.aboutlawsuits.com/proamat...roposed-12177/

I haven't looked at that website yet, but I will.

I cannot even stand to put lotion or creams on my feet more than once a week--massaging is not an option right now. I'm trying to slowly build up my tolerance of touching my feet, but they are incredibly sensitive right now. Touching them sends my feet into major spasms that last for so long that it's not worth it.

My thyroid has been tested many many times, but not since surgery. The clinic here doesn't do anything beyond the basic testing, so that isn't available to me.

Yes, I have been given several exercises to do... and also I do walk to the bathroom or kitchen throughout the day as needed. I also do a 2-15 minute walk (depending on my pain) around the house with the wheelchair to prevent blood clots.