[Mindyk2]

Well, I just returned home from seeing the new neurology specialist I was referred to at Methodist Hopital in Houston. She was very thourough and did more blood work and is scheduling me for a spinal tap. Is this a fairly 'normal' procedure when trying to diagnose neuropathy? I was wondering if anyone here has had this done and what to expect. She gave me samples of Cymbalta and some information on CIDP. This is the first I've heard about this and I'm curious to read and learn more from any of you who have this diagnosis and are being treated for it.
I was also wondering if anyone's neuropathy symptoms (in the feet) gets worse from sitting in and or driving a car for any length of time. On the way home from Houston my feet became almost completely numb. WAY more so than usual and it seemed to go further up my leg than it ever has.
I am sitting here at my computer in tears...just when I think I'm moving in a positive direction things always seem to get worse. sigh...

Any help or advice will be GREATLY appreciated! I'm so scared.
Thanks in advance for your help and advice... <3

[dahlek]

First off? Spinal testing: Read all of this...explains why docs test when where and how they test to degrees: http://www.neuroexam.com/content.php?p=2
This is about how it's done? http://www.webmd.com/multiple-sclero...sis-spinal-tap Don't panic that it's about testing for MS? It's an exclusionary test for MS and for many other neuro things....
Driving? THIS is the kind of test, they either suggest you have someone drive you home or call a taxi! GOT THAT? It is real! I had to go from a spinal in the neuro's offices to the hospital and get blood drawn for a whole slew of extra tests? Sitting and waiting in that 'phlebotomy' area? Well, I wasn't web wise until AFTER I'd had this test? But, I'd been soo scared and Tired of being scared, and wanting all the testing to be OVER [I'd been thru the whole mill?-this was the last phase] That I got home and went to bed for the day and a half afterwards... Luckily, I'd had an experienced neuro to do the spinal [never let a newbie do it, if you can HELP it?] Got the blood work done and in 3-1/2 weeks my diagnosis WAS Complete! I DID feel as if someone had taken a 2"x4"x8' to my middle spine afterwards tho...and I'd fallen off enuf horses and ladders to KNOW what to do [thank goodness].
BTW? You get a LOT of local anathestic so, don't ever over do after! Cause you don't really know where you're at?
WITHIN 3 Days I was BACK TO NORMAL! Tho a bit sore?
It's an essential test, it can rule out things? Or PROVE that you're not crazy! That's the way I think about it!
OH! Prep and afterwards? Eat light stuffs...nothing heavy nor greasy... Salads, puddings, breads, soups? Just for a couple of days, before and after. Can avoid lots of problems...
This mite help? But may scare you too? Don't let it scare you tho! Best to get it done and OVER WITH!
http://emedicine.medscape.com/article/80773-treatment
This IS one you can't drive yourself to and fro for! I mean it! HUGS 's - j

[dahlek]

I start to stomp my feet in the passenger side or at traffic lites [when driving] just to keep my feet alert in knowing there is something under them? I Never drive more than 30 minutes from my house, and plan routes so I can stop and pull over safely and stomp feet.
There have been times when sitting in a car for longer than 1/2 hour? Well, I almost couldn't get out and stand! So, be a chicken? It's OK to Be prudent, time and space yourself to go and do things?
My only hint is to arrange med appts when it's NOT going to be rush hour either going to or from! I make that aspect clear from the get-go!
Then? The whole stress thing of the going and getting back? Well, plan on some solid extra napping? It can and DOES take a heap outta you? BUT, it needs to be done!
I know few here know how bad I was when 'let out' of the hospital, and how poorly I was treated by my first neuro.... Sounds Like you have a GOOD ONE? Keep HIM/HER! Pay the price for the effort? It'll be worth it in the long run!
Keep faith in yourself as well? YOU KNOW THAT RED ALERTS are going off in your body big time...you've got to get somewhere to turn that down to at least a yellow alert. I think you know what I mean. More 's - j

[echoes long ago]

i had a spinal tap a few years ago. If you prepare for it like Dahlek says and stay hydrated and then make sure you lay down for the rest of the day afterwards to avoid the headache you can get if you dont lay down its not that big of a deal. Its not painful at all while they are doing it. Dont let them rush you out of the office after it is done. You should be able to lay down for as long as you need to, up to an hour. I laid down in the car on the way home also. Its really nothing to worry about.

many times when i drive for a long period of time or sit for a long time, i hobble around for a while after i get up. I get very stiff from sitting. I think that is pretty common for certain types of PN.

[nide44]

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.

[Mindyk2]

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.???

[dahlek]

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

[Raglet]

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

[echoes long ago]

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.

[Mindyk2]

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.