I'm sorry and yes I totally understand! I used to say I didn't care if I had cancer or something terminal, I just wanted to know. I got to the point where I hated good test results because it meant I still didn't have an answer. I will tell you that for some reason my ABI values weren't always abnormal. I could go in sometime and the test would be normal and sometimes it wouldn't. I know that I have small, narrowed blood vessels and for whatever reason some days they are ok and some days they aren't. The only way I finally found out what was wrong was when I had that angiogram.

Can you tell me exactly what is happening with you again? I know your feet burn and your legs ache when you exercise but do the feet turn colors?

Thanks so much for your interest and support, myeamans!

What's happening with me? Yes. lots of burning and leg pain, although the latter doesn't sound to me exactly like what I've heard described for PAD. The muscles hurt when walking, especially climbing stairs, but the muscle pain stops immediately when I stop moving, not a lingering ache like PAD symptoms say. Burning is almost all the time.

Color change: GP noticed it, I didn't, and said it was Raynaud's, but nobody's ever paid any attention to it until I mentioned it to my latest neuro. He didn't really look at it, but suggested a calcium channel blocker. It sounded like it invited more trouble than the condition causes, so I said "nope!"

I will keep in mind what you said about your experiences. Thanks again!

My feet would burn bad and would turn purple. Sometimes my toes would get so dark that they'd be almost black but mostly my feet just looked like something you'd find under a sheet in the morgue with a toe tag hanging off of it! lol He started me on nifedipine (a calcium channel blocker) and my feet were better immediately. It was awesome! Then my legs started hurting. They called it claudication. Whenever I tried exercising, coming up stairs, walking, running whatever I did they would hurt but once I stopped the pain would go away. So they put me on something for the claudication and I've felt better since then. Not 100% but better. I am running again and most days I don't have any problems. Except for standing still for long periods, then the blood kind of pools down to my feet and my legs start hurting bad. I would seriously consider started the CCB, a small doseage of it and see what happens. If you do decide to try it, ask for the extended release kind because the side effects aren't as bad. Its been really difficult getting this diagnosis, I didn't think it would ever happen. I gave up caffeine, artificial sweeteners, tried low sugar, low salt, took vitamins, you name it! If I saw it on the internet and thought that maybe it would do something, I figured why not try it. The only thing that I found was sugar makes my legs hurt worse because I guess the blood is thicker and doesn't flow as easily and a lot of salt makes my legs swell more which also happens a little on the CCB. But I'm a lot happier than I was a year ago when I didn't have a diagnosis and my feet were so bad that I was ready to cut them off! lol

No wonder no one can diagnose us! WHEW!
meyanmans? I too get the burning and blue feet, PLUS swelling, It can and does get well? Totally ugly!
As for exercises? GO Slowly...because of lots of other issues, I've NO foot tone at all! It's a 'pain' in more ways than one? Can't stand on toes to get to a top shelf anymore? Well, there's more, but you get the drift.
Joan B? I too went the 'C' route, was totally lucky as the doc found a 'lump' I never did feel due to numb/dead fingertips! [FOUR MORE MONTHS & I'm at year FIVE!] and I will have won!

Describing the pain is key? Something docs mite relate to? Such as having your feet 'blowtorched' or the like...dipped in hot french fry oil is my favorite. BLUNT is BEST!
Sunburned feet these are NOT! Just keep hammering at finding YOUR right words, we all put a heap of them out here for you to pick up? And use the RIGHT ones for YOU! Never forget it IS difficult to get a diganosis, and harder yet, to get good treatments! Don't let your docs leave any stone unturned! Nudge, prod gently, ask SMARTER questions as you learn more? And never let them know you got it from the 'net' per-se? Why, some docs think this/we are junk. ALWAYS CITE The best resources up in the 'stickies', and no more than two at a visit. Nudge, prod and ASK!
I truly hope you get somewhere! Crossing my 'fingers'! 's!!! - j

Well myeamans, sounds like you do have a lot in your experiece that should make me sit up and take notice! Maybe I need to rethink the whole calcium channel blocker thing. It's just the way he was talking, it sounded like:

a. It would only address Raynaud's, which I thought at the time had nothing to do with how my feet & legs felt.

b. That it might really lower my blood pressure a lot, and since my BP is usually in the 110-120/70-80 range, that my BP might go too low.

Now that I've heard your story, I'm thinking it's worth a try. Heck, like you, I've tried so many things, and none of them, be they pharmceuticals or more natural things, have made anything even a little bit better. So maybe you are The One who has what I have and knows the piece(s) I need to find.

How did your Vascular specialist diagnose your PVD. I get the change of color in my feet too and they cannot diagnose me. I truly think mine is also vascular but my Dr. doesn't think so. He just told me to wear support stockings. I'm only 37 and was very healthy until my feet started to burn 6 months ago.

I started off slowly with the CCB because of the blood pressure thing because my BP is already a little low. In the beginning I would get a little light-headed if I stood up too fast but overall it didn't go down too much.

I think there have to be thousands of people like us and we can help each other out. I love the internet and the fact that I can talk to other people going through the same stuff and possibly get some help from someone or give help to someone. Sharing advice and tips with each other about what works for us is probably going to get us a lot better than a doctor will.

I don't know if our situations will turn out to be the same but ask me anything anytime and maybe I can help. I really hope you get some relief soon.

When my vascular doctor couldn't find a pulse in my feet that's when he decided to do the angiogram in my legs to see if there was any blockages. He found my arteries are very narrowed and small and blood wasn't going through very well. He injected nitroglycerin into the arteries and it made them dilate and the blood started flowing so no I'm on the nifedipine to dilate the blood vessels.

It really sucks dealing with something like this especially at our age. I'm 35 and most doctors wouldn't even think of performing that on someone my age. My doctor even said that he thought it was a long shot but that he didn't have any other ideas to try so he wanted to try that. If your doctor isn't doing enough, demand to see someone else in the same office. That's a lot easier than starting all over with a new doctor in another office.

By the way, those support stockings do not work. I've tried different socks, shoes, lotions, powders, etc.

I agree on your comment about the internet, they hate it when you say you saw something there. You just have to find a good doctor, a doctor that cares and one that will keep an open mind.

I confess to not knowing much about this...I'm confused by what you said about the doctor discovering that you didn't have much blood going to your feet, myeamans. Isn't that what the ABI values are?