Like my boy says, "Daddy drinks because he has to."

Nothing yet in terms of relieving symptoms...I have been more mellow lately, maybe the gaba, maybe the resignation. Scalp is burning more...so hopefully this thing does not progress more...hey, there is not that many more areas that it can go! I am waiting for results of skin biopsy, then will meet with the King of Periphereal Neuropathy at Weil Cornell. He wears a crown and everything.

Until then, it is all just:

http://www.youtube.com/watch?v=31SHkXAEd8A

idiopathic
 

Mark,
I was diagnosed with mild sensory, motor idiopathic PN. I also have no problems at night, only when I am off my feet, walking is ok. I do not have the tingling while walking. Maybe our PN will disapear, just like it came, abruptly. I still find it hard to believe that I got this monster, mine is mild too, I feel terrible for people with severe PN. This is terrible. I started my vitamin regimen also, I also have an appt at the Univ Of Chicago Jack Miller, suppose to be tops In Peripheral Neuropathy. hope it helps Good Luck, and keep us informed, Lynn

University of Chicago. Don't go there, I am grad, and look what happened to me.

Just kidding, there is great research coming out of there, and the docs look like they are top flight. U need to find the right meds in the meantime while you work on the other healthy component.

Be well, and great luck to you.

Mark

SadFeet
 

I hope you like J.M. they are very good.

Like others you have put a smile on my face as wel, Mark thank you.
Wondering if or when you drink does your feet itch? Drinking is on the
list in a big way of a no,no..I am on 3600 of Neurontin,hmmm makes me
walk like i'm drunk. Please visit again. Sue

LOL!! The fire I can relate to. My feet are on fire right now. It comes and goes. Hopefully they'll be able to pinpoint the problem for you.

For me I couldn't take Gabapentin. It made me suicidal. I take 1- 50mg Tramadol a day and when I need it, .125 of Mirapex. Works like a charm. Tramadol works very well on nerve pain for me. Nothing else mutes it in quite the same way. The Mirapex gets rid of many of the other symptoms, the creepy-crawly-gotta-move-my-legs feeling as well as some of the tingling and other symptoms. Mute seems to be a very good way of describing it as well.

I do have pain free days from time to time.

You've found a very good place to be, here on this board. I had no real progress in treatment or what to do, how to handle it all until I found this 'place'. :)

Hi there.

You are obviously a very very intelligent person. I got that from reading your posts.

Now here's MY question. Are you doing anything to lose weight? I'm not talking about going on a diet. I'm talking about lifestyle changes.

I had to do this. Took me YEARS. But I'm 61 and thankfully, doing this, probably saved my life.

I don't mean to come off as preachy. I'm not that way.

I wasn't ready all those years ago to lose the weight. I should have listened to others. I should have listened to my doctor when he told me "you need to lose weight, it's too much strain on your joints, on your heart, etc."

I thought they were all crazy. Guess what?? They were NOT crazy.

I tell you this because 300 lbs is too much to carry.

I made a great deal of changes in my life. I had no choice. Well, I DID have choice. I could keep eating the wrong stuff and ultimately die, or I could change my attitude towards food.

I did the latter.

Listen, going around with 300 lbs is no small thing. It's hard on the heart and other organs.

I say this with all the compassion I can muster.

If you make one small change, you can continue to make them, and one day, you will see that you weigh 200 and not 300.

You'll walk easier, you'll breathe easier, and you just might not be in so much pain.

Your body needs to be balanced.

And about the chiro-neurologist. His name is Dr. Scott Theirl. He has an office in NYC. and a website called functionalrestoration.com

Dr. Theirl also works with autistic kids. He does it all.

He literally saved my husband's life. When he went to him, he weighed 300 lbs, had severe neuropathy, and wore a Fentanyl pain patch. He was also stiff as a board and had never exercised.

That man made so many changes I can't begin to tell you. Alan saw him last week.

And a few months after beginning treatment with Dr. Theirl (and a change in dieting and exercise), my husband was able to get off the Fentanyl pain patch). No small accomplishment, let me tell you. My husband's neuropathy almost did him in.

He comes home a different person after one of those visits.

So look up chiro-neuros.

Ask questions. Not saying you should just jump in your car and go make an appointment. but ask questions.

You never know.

Melody

No feet itching from Mr. Lagavulin. Also, no real side effects from Gabapentin, aside from being not quite able to always verbalize what I want to say.

Yes
 

Glad there are no itchy feet...I do have the problem with being able to
Verbilize, to be honest my 3 children all in there 30's say that problem
came before the med. This could be true ,but I sent them home with
and remind them they owe Mama Sue lot's of money,,now if I can remember
for what. Ahhh read up on IGIV sure is helping me as does the b6,and b12.
and Morphine if needed..My Neuro does not believe in her patient's
screming in the night or day.Some have so much pain with PN others
feel very little,this once again is a good group,welll to do as poor as can be,
but we care about each other,and it's always nice to hear anything new from
someone new,once again come on by ya here.Best to all the rest,Hugs Sue

Just a thought
 

You mention that your legs feel fine when you are horizontal (sleeping or standing). But sitting, you get the burning pain. Have you considered your spine? There is definitely compression on the disks when you sit. Depending on whether you have any stenosis or not, this could be a causative factor in your leg burning.

Another post comidin user -Hey there
 

"Like my boy says, "Daddy drinks because he has to."":D

-LMAO so funny. I agree with the consensus on your humour. You know what I love about House? They never stop trying to find out what's wrong...wow! Just imagine if that really happened? We wouldn't all be here trying to figure out things for ourselves.

I just wanted to say "Hi". I'm over with the back pain people. It was pointed out to me that you had some problems and had been on Coumidin.
My problem is pretty much the opposite of yours in that I don't have problems sitting it's getting up from sitting and trying to walk that brings me down.

Interestingly though (albeit no doubt unrelated) in the past in the same leg that developed the clot I've had extreme itching and heat on the outer side of my thigh. It was not constant. It would just show up and then disappear. I remember one time where the heat was enough to wake me up. - This was years before the clot situation ....just one of those things that makes me go "hmmmm"

I also understand the weight issue. Mine has been up and down my whole life. Unfortunately the only way it's ever down is with working out and that has not been possible lately.
It never ceases to amaze me when a doctor says "Well,...you are overweight you know" Maybe we should make shirts that say "Don't ask...I know":)
I also know that being overweight for me is nothing new and that 9 months ago I was able to sit down and then get up afterwards! Now can we get on to that discussion!:mad:

LOL Ok. I'm back *phew* just had the need for a minor rant!:D

I hope you find a solution to your problems. If you want to chat about post thrombotic syndrome or coumidin give me a holler! :)

Mae