There are lots of resources to learn from – go with your intuition!

September 4, 2009 at 7:26 pm

The more you know, the better you can understand what all is going on with you.

Here is a site that is all about the multitudes of neuro issues it could be:
[url][url] Hope I did that right?
The page you should go to is just the index! But, each condition includes a very brief synapsis of special diagnostic tests for THAT condition. At the top of this page, is an outline of testing done for various conditions.
Another site I like is: [url][url] Which outlines the various twists and turns [as well as tests] it can take to get a diagnosis. There are more if you want them, feel free to PM me.
From my own personal experience the one big THING is fear! Fear I will get worse…etc. and then what? In my own case it took me two other neuros to overide the first neuro’s diagnosis of ‘just PN’!

As for testing? I recall I’ve had several of both types of nerve conduction tests, the MRI’s of the neck and spine, spinal tap [not so bad if you KNOW what it entails?] and heaps plus of blood work!

Now to more practical matters…were you cold during any of your nerve conduction tests? Being cold can distort results to read ”normal”-that wasn’t my problem as my feet tend to turn BLUE w/cold. Also nerve tests early on tend to read either normal sort of ‘off’, but not enough to worry about. Thus tests every 3-6 months at times are done to ‘track’ progression of problems.

Another question, if I may? did you have a bad cold or the like before you got numbness? Were you on antibiotics for any length of time before problems? Some of these can and do cause numbness and more. And, have you undergone glucose tolerance tests [the longer kind-over 2-3 hours?] as diabetes can create havoc on the systems.

Lastly? THAT FEAR FACTOR!!!!!!! It is a biggie for many, myself included! I have had too many instances in this year alone which have turned my arms and legs into total, non-functioning jello at times [with some dire consequences] – The key here is to PLAN ahead where you can go so you don’t fall, and if you do? You can get help rite away as needed. Best thing? IS not to fall. A good example is that while I can drive, I no longer do it in rush hour times for doc appts. I’ve found that either foot will go ‘dead’ at a very dangerous moment, and I avoid that at all costs.

Again, the more you learn the better you can deal with it all. You are better able to understand what is happening to you and why – it’s complicated chemistry but you can find some web sites to clue you into the processes.
Once there? The next issue is treatments available. I am disappointed in the Mayo in that they are more prone to treat with steroids [and their whole set of side-effects/consequences] than other centers such as in New York City or Baltimore. But that is just my opinion.

When I had my onset, it took me 14 months from onset, three neurologists and a heap of tests that blur in the mind at times, until diagnosis. I did it while I could, fearing the worst and trying to prevent that. It was my own ‘gut instinct’ that kept telling me that this is getting worse! Gotta stop it! For me treatments help immensely! I was very LUCKY! And still am overall.

There are many here far more brave than I am! Learn from them please.