I recently drove an 8 1/2 hour trip to MA. from MD. Actually, my wife did most of the driving and I was navigator. Just sitting in one position for hours (we would stop every 3 hrs or so to 'stretch', gas up, or eat) would make my whole side of my leg from my feet to my hip, go numb. My feet began terrible burning, and when I got out, the pain was intense. Walked like a drunken sailor until things 'worked the kinks out'. Needed at least 15-30 mins to get to the point where I could get back in the car for the next 3 hrs. Usually I can drive for the same period (3hrs) until I need a break. The constant accelerator/brake action keeps my feet active, but they still go numb after a while. Cruise control lets me move my feet around and stretch them while driving on the interstates.

Thank you all for your helpful advice and info. I am anxious to get it over and done with. More anxious to hopefully get some sort of diagnosis! Hearing others experiences and stories makes me feel 'not so alone'. Thanks again for posting!!

By the way dahlek?? What was ur final dx.???

I hope you DO get answers from the spinal? But there are more tests that can be done to clarify things further. Be patient! These tests take their own time, and it's like sitting on NAILS waiting for results. The patience comes in knowing IF you have to get more tests or not. Or...IF you have to go get a second opinion from another neuro!
Ask your doc POLITELY for tests results? Get COPIES and learn about them! They will make your BRAIN cross-eyed! BUT, you are telling your doc that you are CURIOUS, INTERESTED, INVOLVED, ENGAGED and all those 'words' docs love to hear? Then go in each subsequent visit w/?'s about what does THIS mean, or THAT? [Of course you both will know that you've already looked it all up?] But Good docs love that! Bad docs feel as if you are questioning their 'opinions'. Got me? I liken it to trying to get educated w/out going thru med school....just enuf to help me live with this all!
Hope this helps? Hugs hope and heart! 's - j

personally I would only agree with a spinal tap if a relevant disorder was suspected, rather than just to exclude anything that might show up in the spinal. I think that doctors can be more intelligent than that, especially if pushed to. I would like to think that my doctor could at least make a reasonable differentiation between which nervous system was being affected! I know that different cultures vary in terms of the amount of testing they do, but I am pleased that where I live such tests are only done if there is a reasonable index of suspicion, rather than just for exclusionary purposes. I didn't even have one for confirmed cns lupus because the doctors said they already knew what they would find (antibodies in my CFS).

just mho

cheers
raglet

I would agree with the above post about using a test for diagnostic purposes in relation to a sural nerve biopsy since it leaves permanent numbness, sometimes pain and a scar. The nerve biopsy is useful if certain causes such as vasculitis are suspected but for confirmation that you have PN there are better methods. As far as a spinal tap goes, i disagree with the above post because there are many things that could show up in a spinal tap ( bacteria, meniningitis, autoimmune markers, lyme markers, white blood cell count and others) and may give a good indication as to which way the search for a cause should proceed. The spinal tap is also not that big of a deal , it is invasive but not to anywhere near the degree of a sural nerve biopsy. I had one done after an exhaustive search and testing for any indications of a cause. I had mri's, blood tests for autoimmune markers, paraneoplastic cancers, vascular testing, epidurals,etc. Nothing came back positive except for the emg/ncs itself. If you need to do a spinal tap to find a cause or to give yourself peace of mind that you did an exhaustive search for a cause i would not hesitate. I would do another one myself without trepidation if it was needed.

Again, thank you all for ur words of wisdom.
I am scheduled for the procedure next Wednesday afternoon. I am reading and learning so much from this site and other info all over the net. I think I'm giving myself 'carpal tunnel' typing so much! lol!
You are so right dehlek (J)...I have made up my mind that I am going to be very proactive with my doctors from now on. Stop sitting back and being passive. I'll ask more questions and be more aggressive (in a polite way) to ensure they know I'm ready to exhaust every test available to try to figure out what is going on in my body!!! I'm only 41 and just starting my life over after a very abusive marriage and ugly divorce. I had/have so much hope to finally have a happy future for me and my son. I am not going to let this ruin the remainder of my life! I am determined to get answers and help if it's out there...and God willing I will.

be very nice, polite [yep swallow the nails!] and ask questions as IF you are stupid.... They'll know anyhow? Simply because you ARE asking questions! DUH?

For the interim? GO KICK BUTT! - Got that? Just do it 'nicely'! Last thing you want is to be labelled an 'adversarial patient'!!! No way lady!

Smart/dumb is the best way to go, so far, I've found. Sad that it has to be done that way? But, ya gotta do, what ya gotta do!
Hugs!!!!!!!!!!!!!!! - j