It took me a year and a month and three neuros to get properly diagnosed.
I had what was initially diagnosed as a 'plain old simple sensory neuropathy' and then was told to look it all up on the internet! I wasn't 'net' conversant at the time and the public libraries didn't have much info that was current on it all other than the two paragraph basics.
According to the notes my neuro writes on my 'patient sheet', I've either CIDP or an agressive immune neuropathy.
That all said? Here is a post from the 'neuromuscular' forums here that cites some very good references for you:
http://neurotalk.psychcentral.com/thread38797.html
In my own case? I'd had a nine week long bout of pneumonia, followed by a short return to health and 6 weeks after recovery from that I started first with the classic numb toes, which progressed to the feet and ankles and my fingertips to almost my elbows. It took about 4 weeks and five nights of not being able to SLEEP to call my GP and was told to go to that ER. The numbness and severe burning progressed further in an ER where I waited a VERY LONG TIME and the burning progressed up to my knees! I was hospitalized for 3 days and that 'rest' did a real bad number on my muscles and coordination... After 9 months of more progressions, and the neuro 'on call' from the ER being VERY unresponsive to concerns as the numbness and pain progressed up my torso? I went and got a second opinion...I got the third as neuro #2 wasn't fast enuf [in my mind] in terms of how this pain and numbness w as going! I see neuro #2 w/#3's
knowledge and permission, as I live in the suburbs and driving downtown by myself could be a danger to all, including me. One of the factors about many neuropathies is the extreme fatigue that comes with it...that tiredness CAN and does affect/effect the muscles!
Do keep in mind, that my very first set of nerve conduction tests didn't show that much damage [about two weeks after the hospital] but a year later? Showed LOTS. Unfortunately it often takes time to really show damage.
After reading criteria for testing of CIDP? I've got it or a very close cousin. And, YES the treatments are pretty much the same, tho some are invasive and others can have long term serious side effects.
The definitions of immune-type neuropathies are changing, they used to be called Acute: meaning onset to the point of paralysis usually within a couple of days; Semi-Acute: from 3-8 weeks after 'onset'; and Chronic: which means it lasts a long time and doesn't go away w/any treatments. Actually CIDP used o be called 'chronic GBS until about 4 years ago.
The causes are as for most neuropathies: acquired [such as the flu, diabetes or other med issue]; Toxic [such as alcohol or chemical exposure]; and lastly, Hereditary-this is the hardest to get docs to assess, as you have to know your family history very well to have any ideas on this. IMHO tho, cancers can help cause severe neuropathies-tho who your neuropathy appears, is determined by the WHEN of the cancer discovery and treatments. I say this because I've both. Tho the Neuropathies came first by 3 years. They could be independent or connected-but we shall never know.
That is why I would encourage each of you....chemade, IVpound, sadfeet, amit and Hope 15 to be somewhat 'assertive' in seeing testing and maybe treatments as available. But, not soo assertive that you put any new or current doc off in trying to help you. Do it in steps and you might actually have some success! If you can, call back and see if you could be put on a 'cancellation' list? It means going at the drop of a hat, but it can get you IN sooner. AND you don't have to see the chief cheese of the practice - The others in that office are likely to try harder.
I was extraordinarily LUCKY with both Neuro #2 and Neuro #3! I do KNOW that! I just hope and hope hard that you find these kinds of docs that are curious and will listen to you and actually try and help you!
's to you all. And do NOT GIVE UP! - j