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.

Shoot! I meant "belief" in the title not "believe". Doh! It's been a LONG day. Sorry.

Sarah Mae,

What a terrible day you've had. First the frustration of not being told of an autonomic nervous system problem, for which there is no excuse whatsoever; secondly, the tragic death of your friend because of a drunk driver. Am so sorry to learn of that.

As you've probably learned from your search, the QSART and tilt table test for postural orthostatic hypotension/tachycardia are both tools for diagnosing autonomic nervous system abnormalities. The fact that you weren't informed that you had a diagnosis of POTS is unconscionable. At the very least, you should have been given the name of what you had and what might happen when you went symptomatic so you'd know what was happening and why.

You're definitely doing the right thing by going to the doctor ASAP. Don't forget to bring those records that identify POTS. If seen in black and white, it'll be "official," and you will be taken very seriously.

Sheltiemom

POTS is a form of neuropathy. It is part of the spectrum of autonomic neuropathy.

HOW you got this is my question. Since you did not have this before the bypass surgery, I am wondering if something occurred during or shortly after that surgery.

Midodrine or Fludrocortisone along with compressive stockings are what they use to control the condition.

Again, POTS=Dysautonomia=a form of Neuropathy. Your case seems particularly severe to be classified as POTS, since most are not bedridden with this kind of severe pooling, but, by all means, question, question, question.

Hugs to you. You hang in!

Thanks for that information. I'm currently researching POTS to learn more, but don't find anywhere that it is a form of neuropathy. I believe you, though... but do you have a website or something that says so? I want to show it to my doctor.

I am becoming more concerned because I've been told (and read) that autonomic neuropathy can affect other organs in time and can be fatal. Is that true? I am worried.

I was told by the neurologist at Mayo that I had large fiber neuropathy, though the diagnosis on paper says that I have small fiber neuropathy--and now this suggests autonomic neuropathy? I am so confused!

http://www.dinet.org/pots_an_overview.htm I guess that says "a limited autonomic neuropathy"

Prime example of how we have to be our own advocates. Unfortunate but true.
I'm excited for you Sarah! I want to see you up and walking again!
Whatever you do, do NOT let them brush this off so that they can 'get to their next patient'........

Man i'm cranky these days! I better maybe get back on the Morontin.....maybe it WAS helping.
I'm about ready to take my marshmallow gun and have a showdown with the DEA and the entire medical profession.

Keep us posted Sarah, you've certainly got my prayers!!
Rae

Sarahmae,

Everything is on a continuum with disease. PN can be a bit of tingling for one person and a death sentence for another.

For you, you have an acute onset....they know when your condition came on....and they know how....basically, the surgery....or some sequela of this.

POTS is too mild for what is going on with you, if your feet are turning that purple....POTS is a mild condition....not to say you have severe autonomic neuropathy either.

Blood pressure maintenance is so complex...it involves baroreceptors that sense pressure, and if those get damaged, there are issues. The valves, the innervation of the veins, the elasticity of the vessels...i don't know.

I am optimistic SarahMae, that you did not have this when you went into the surgery....so, the docs know WHEN this came on.

You keep researching and hanging in there. What you do have is like a POTS but a bit worse, and yes, POTS is on the continuum of autonomic neuropathy.

I am assuming they tried compressive stockings to the waist on you? Florinef or Midodrine...those are basically what they use for POTS.

This is another thought I have had...ready?....OK, when you were larger in size, your blood vessels were larger and had to transport a LOT more blood to the heart. Now that you had very rapid weight loss....could it be that you have more blood vessels and larger ones, than are suitable for your smaller body? Have they ever thought of occluding some of those vessels so you have less veins for the blood to pool in. We don't need all our veins and if you should ever need them again, they grow back, as needed. I don't think they go away tho, if not needed. You could have pooling all over, not just the legs. The splanchnic area also has a venous pool area. It is in the abdomen. You lost a lot of weight and it seems plausible that this is a matter of physics. Is it possible that your body has not adjusted to its new size?

You are a dear young woman, and I am sure they will find the cause of this.

The reason, I came up with this is, when I did triathlons, I had an exact duplicate of a major vein in my calves! I had no idea that I had this until they did doppler to check for clots when I had my syncopal episodes. I don't need that vessel anymore, so I wonder if it causes me problems.

Wow, what great response! Thank you for weighing in on this grave concern to Sarah.

Sarah, here is hoping and praying that your upcoming Dr. appt. helps to get you headed in the right direction. We are pulling for you!!

Mark56