Hey. Sorry, I've been away. Yes, you need to get that test either repeated or something else done. You need to see a vascular doctor and make him/her listen. After "talking" to you the last few weeks I really strongly believe your situation is like mine and the CCB's will help you.

Well, I forgot as of the last writing that I had an appointment with doc2 this morning. But I did remember over the weekend fortunately and went to see him. He said that my ABI test results indicated excellent circulation to my feet and that he didn't think there was anything to suggest that my problem is vascular and that the CCB was not that a great idea after all. So I dunno...

He did say that he would try to get doc1's office to move a little faster in getting my other meds changed (from Elavil, Neurontin, and Tegretol t0 Topomax only) for now to see if that is any better for the pain. So I guess that's something. And of course he wants me to continue with the PT. (Cha-ching!)

I don't know what to think at this point.

Ugg! This is so frustrating, I feel like I know exactly what you're going through. Did you tell this doctor what the other one says about raynauds? Did you tell him about the leg pain when your exercising and how it gets better when you stop? I still think you have the same thing going on that I do. I really wish you could get some relief. If you get a chance to see anyone else ask them if there is a possibility that you are having some kind of blood vessel constriction. Maybe something like vasoconstriction. I guess the only true way to find out would be a arteriogram/angiogram but you'd have to find a doctor that thought it was worth a shot to try it and you'd also have to be willing to go through with it. It's not a bad test or painful one but it is done in the hospital and costs a lot.

I so hate that you have to deal with this, that we all have to deal with it. I'm so fortunate that I found a doctor that followed his hunch. I really hope that you can find that sometime soon too. Where do you live? Come to NC and I'll take you to my doctor! Ha ha Good luck

Doc2, who I saw on Monday is the one who said maybe I should take the CCB, but now says that the ABI result was so good that I shouldn't. Speaking of which, I still don't understand: if the ABI number is good, then how could it still be that my circulation isn't good and need I the CCB?

I've still never gotten any real communication with the neuro (doc1). It's coming up on a month now since I've tried to get some kind of answer on my meds. And that's just to get to speak to a nurse. I just now left another voicemail. So maybe I'm changing meds, maybe not, who knows? Maybe they're not calling me back because they're so embarassed at this point......naahhh, I don't think so.

Well, your circulation may change from time to time...or during the day.

When you were tested, it was fairly okay...meaning the vessels were open. They might constrict, due to low magnesium levels or poor nitric oxide production, then open again later. Fixed issues due to blockages would remain closed up however, such as plaque deposits.

Your blood may be thick and can't circulate well at the capillary level. The red cells may be too large (from low B12) called macrocytic anemia. A raised MCV test indicates this.

You may have too much triglyceride in the blood, thickening it.
Studies have shown that eating too high a fat content in one meal can slow circulation for several hours. You may have proteins in the serum from cryoglobulinemia:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001567/
This will slow the blood flow. Once slowed down, nutrients cannot get in and waste products cannot get out of the peripheral areas properly.

So you need to go back and look at your tests, to see what your blood work said and which tests were done.

It gets complicated, that's for sure.

Yes, Mrs. D is exactly right! I had some of those tests where my doctor said no, it can't be that and then some that he was like oh my god, I can't believe this! If I ate a lot of sugar, it would make my blood thicker and syrupy and that would make it flow slower, I wish I knew exactly what it was that made them constrict so I could stop it, but some days were better than others and I could always tell when the blood was not flowing because of the way I felt. All I know is everything you've told me sounds exactly like my situation. EXACTLY! I suffered through it for so long and you can't even imagine how grateful I was when I finally got a proper diagnosis and got on the CCB's. When I went into the hospital last Thanksgiving with the heart failure they took me off my nifedipine for a month. I was miserable! I was begging my cardiologist to let me have it back. lol Thankfully they did.

I don't know at this point what you can do because if the doctor you're seeing doesn't want to even consider it then the only possibility now is to get another doctor and I know how much of a hassle that is. You need to be firm, call them every day, tell them you know something is wrong and they need to help you. Tell them about my situation and tell them the things doctors hate most "you saw it on the internet" but you are the only one that is going to be looking out for you 100% so you need to fight with them on it.

Believe me, I know everything you're going through. I'm not very assertive, when I would see a doctor and he would shoot me down saying that wasn't wrong with me I'd just sit there like a little kid not knowing what to say in fear of crying or something. If only I spoke up a long time ago I would have save myself a lot of money in co-pays and stress and pain. I hope something works out for you. I really, really do.

Hi ive had hot hot feet for 12 years P/N / at night time I would soak my feet in cold water , maybe 2 or 3 times./ during the day a bit more . goodluck

Thanks everyone for your ideas.

Latest in the saga: doc1 office finally called back and said that they phoned in a script for Topamax. When I said "OK, so which ones am I going to stop taking?" she said "None, keep on taking the others too."

"You mean he wants me to take Amitriptyline, Gabapentin, Tegretol, and Topamax?"

"Yes, keep taking everything that you're already on."

I'm not doing that. I don't know much about this stuff, but that sounds insane to me. I will try the Topamax, but I didn't tell her that I already stopped taking the Tegretol (I did it gradually).

My brain is so buzzed from all these meds that I can't even think about the circulation issues right now, but I'll keep checking in as I (hopefully) get something under control here.

Thanks again.

Topamax shouldn't give you a brain 'buzz', but it did cause me to lose my short term memory for about 3 months (14 wks) until I stopped taking it. I titrated up at 25 mg/wk - up to 350mg/day, but never got to my doc's goal, of 400mg/day. I quit before then. It was a walking nightmare for me, but others have had successful results with it.

It's not just the Topamax, Bob--it's the whole cocktail, which was already causing impairment. I'm not noticing the short-term memory loss so much yet, but I just started with this new addition. He started me on 25 mg 2x/day.