Frustrated beyond believe yet hopeful
 

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!:hug:

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"

Sounds like you are making headway!
 

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'........:eek:

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. :cool:

Keep us posted Sarah, you've certainly got my prayers!! :hug:
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.:hug:

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.

Cyclelops has such detail
 

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 :hug:

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.

I didn't know they just withdrew midodrine....I have florinef....but I dont know if they could use that with kidney issues.

This drug has been on a "watch list" for quite a while.
It causes death in some patients. It may cause spikes in blood pressure while in a horizontal position...leading to strokes.

I found it rarely used in community practice in general, but we saw some use in nursing home patients. Since it is available now in generic, the patent holding company will probably accept the "withdraw" suggestion, and both forms will be no longer available.

Hmm, they mentioned midodrine to me, but settled on fludro....good thing. My doc always felt I could have supine hypertension, so really mido would have been a poor choice.

Thanks for the info.

Glad you made it back from 'survival camp' :D

It was less "survivor" this year.

We even got a new frig...better food storage and safety.

But the spiders were pretty bad... a brown recluse on the wall of the outhouse one night gave me major spooks.

I've put a solar light outside about 5 ft from the outhouse so the bugs would go there and so the spiders would follow. But one night this brown recluse was there! (had the markings on the back which I have researched before).

Mostly we have tent spiders, orb weavers, and rock spiders, and this was the first I've seen of the brown villain.

(not to hijack this thread--- so I am not going to say anything else here)