Currently in the chatroom with rrae and pooh_ac... and thought I should start working on this post.

Ever since May I have had severe pooling of the blood in my legs and feet, which turns my legs so dark purple that they are almost black. It happens every time I sit or stand, so I have been bedridden with my legs elevated for almost 5 months.

I went to a vascular doctor, thinking it was a circulation issue. He said it wasn't, and that it was just a part of the neuropathy and to talk to my neurologist.

Well, I have the most severe case of PN that my family doctor and neurologist have both seen. Yet neither of them had ever had this problem before with a patient.

Also, I had done lots of research, read personal stories, and tons of posts on here. None of them talked about pooling in the legs and feet. I started to wonder if it truly was due to the neuropathy, but didn't know what else to do besides believe them.

So, everyone on this board has been telling me for a few months to get all of my medical records. I finally have done that (well, still waiting on one doctor to send them). I went over my results from Mayo Clinic to look at the bloodwork. They took 19 viles of blood, and she spend less than 10 minutes on all 4 days of tests. She didn't go through each one and talk about the results, just said "everything looks fine except you have peripheral neuropathy".

In my Mayo results, one of the tests (the QSART test) showed that I have "orthostatic tachycardia suggestive of POTS (postural orthostatic tachycardia syndrome)". I googled it and guess what I found out? POTS deals with low blood pressure that can cause someone to get dizzy when they stand up.

Guess what else it affects? POOLING IN THE LEGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yep. Stupid doctor at Mayo didn't tell me that I had this because they said it was "asymptomatic". Maybe at that point, but ever since I got back from Mayo, I have had pooling. They didn't tell me I had the problem because they didn't think it was affecting me. Um... DUH!!! IF there is ANY problem, you should tell the patient!!!!!!!!!

This affects pooling in the legs and feet and causes skin to turn purple!!!! HELLO!!!!!!!!!!!!!! It's sad that out of all the doctors I have seen, none of them have noticed this. I'm glad I was smart enough to read through all my medical records and find this out. The doctors have all been blaming it on the neuropathy, when in reality, it is not related at ALL.

So now I will have to wait until next week--my doctor is out this whole upcoming week. But then we will go and talk to him about this. There are only two things that can be done--compression stockings, which I can't do because of my neuropathy. The other thing is "acute saline loading" which looks like it is done through an IV, but I can't find much out there.. so I could be wrong.

I'm super excited to find this out... and can't believe that out of ALL the doctors I have seen, nobody thought of this. I've heard of POTS before--it's a lot more common than neuropathy is I think. Seriously?! Ugh.

Maybe this saline loading can be done and I can get the pooling to stop!!!! How awesome would that be!!!

http://www.nymc.edu/fhp/centers/syncope/pots.htm

I am both frustrated at the doctor and hopeful. It's been a rough day as well because one of my friends was killed by a drunk driver. I posted a message about it asking for prayer over in the SCS forum.... but if anyone here is the praying type, I'd really appreciate your prayers on that as well. She left behind a husband (who was driving the car) and a 10 month old son.