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Old 08-08-2007, 02:11 PM
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Mark I truly know what is going on...

in your MIND and I believe that you will find that many here have been through that 'process' of having the problems [the getting WORSE part is the pits!] and then getting diagnosed..it seems to take a horridly long time, but believe me, as they learn more things about YOU and what's going on with YOU sometimes things can go too fast to asorb and understand. It's not only a scary prospect, it is one durned terrifying one!

The nerve conduction studies and all the other tests a neuro does are outlined in http://www.neuroexam.com/content.php?p=2
This site explains an introductory neuro exam, and all the aspects a neuro is looking at/for on the first thru dozenth visits. Since Neuropathies have over 200+ types and neuro conditions [probably with variations as well] are about 300+ [guess here on my part, sorry neuros] the WHOLE process is one of eliminating 'things' that can show on tests or nerve studies and MRI's and Bloodwork. The key here is to NARROW down what has caused your problems and then what is causing them to get worse.

Liza Jane's worksheets are a valuable tool for YOU during this process of exams and diagnosing. You could/should not state "Why aren't you doing test X or Y, as Liza Jane Says?" The 'sheets' have been put together by many PN'ers here who have arrived at their diagnosis/es due to the variety of things that can cause or affect PN. So The sheets are a roadmap. If after you've done a library load of reading, and can 'well, sorta' understand some of the terms...you can then ask your docs: What about M test or N test? Do you think it's of any worth for me? That way the docs think it's their idea.

As for nerve conduction studies...For me they were a no problem ! I felt nothing....for others who have some neves left, they seem to not only hurt like heck, but keep hurting well beyond. This isn't to put you off on them...they are a very key part of diagnosis. Just that THEY HAVE TO BE DONE! It's sounding like your docs are well on top of the above bargain basement disgnoses testings that are normally done.

Rose is right in encouraging you to take extra B-12, it is one key kingpin to help the nerves and the rest of the body heal.

Joe is correct as well. Even tho you may have had issues in the past, MANAGING THIS animal is a life long commitment. So, if a neuro prescribes 'anti-seizure' meds such as neurontin or Lyrica and some pain modifiers as well...Take them, take them on schedule and do it religiously. These meds modify our 'systems' to ease the pain. Going off schedules is more dangerous than being on them. Your docs will monitor you closesly. I suggest you keep a diary about your life, daily stresses, what you eat, and how much you do or overdo.....to keep track of how you feel, before during and after meds and therapies.

I also suggest that you read the 'stickies' at the top of the forum, and as many posts as you can handle to learn about US and how we deal with this all.. or not. If you ever have questions don't hesitate to ask openly or thru PM...
As for me, by way of background...I got 'mine' about 3 months following a 3 month bout of pneumonia...I was pretty healthy before all that, now? I am grateful I can still walk [short bits] and drive [again short bits] for others it can be truly scary. I don't think your docs are going to let you get to the truly scary stage.
I have found that most all folks here give more than they could ever get. They KNOW where you are now, and can appreciate all that being there means! Read, learn, ask questions, and make up your own mind as you find out more info.....
I sure hope this helps and is some small comfort or even a small hug of understanding... When no one knows...well It's a scary place to be! - j
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