Idiopathic.........
 

Because we have no control on progression if neuropathy is idiopathic, what is the probable outcome of idiopathic, does it "normally" progress quickly, slowly or is it a lottery type thing?

Sorry for all the questions......but I am trying to get as smart as Glenntaj.....

P.S. Glenntaj......are you a doctor in disguise?

I guess the short answer is,,, (who knows),, I wish Iknew

Who is Glenna?:rolleyes:

Sorry......
 

I meant Glenntaj.......(I bet you knew that!)

Hi Invisable,

I have idiopathic SFPN which started in my right toes and now after two years is now in both feet and legs, I wish I new what was ahead for me it would make life a lot easier, the not knowing is the hard part. It seems to be slowly going up my body I guess I just have to wait and see. What fun.

No, Glenntaj is not a doctor--
 

--and he doesn't even play one on these boards :D, just a patient who had a very acute onset of something most doctors couldn't explain and who became a fierce autodidact (thank heaven for the Internet).

(I didn't know ANYTHING about ANY of this ten years ago. But dealing with something that medical professionals are baffled by and that you have to deal with every day is very focusing. Now, of course, I frighten the **** out of doctors who are insecure and/or not keeping up with their continuing education. I like to think I'm evolution's way of driving bad doctors to get better. ;))

Now, as to progression--it is, unfortunately, highly variable. Most neuropathies with chronic or insidious onset are slowly progressive, though with good nutrition and such many can be slowed or even arrested. If one can find the cause, and eliminate, healing can occur, and it may even be reversible to a certain extent (see toxins, gluten, thyroid, vitamin deficiency).

People who present with slow onset sensory syndromes do not often progress to motor problems--not many of these people wind up functionally disabled. They are more likely to experience autonomic dysfunction--and that can be severe.

People with acute onsets have highly variable prognoses, ranging from rapid deterioration to monophasic syndromes (such as Guillain Barre) that can be greatly recovered from, assuming the initial attack is survived. (This is easier with purely sensory syndromes, such as I experienced, than with "classic" demyelinating acute neuropathies that attack large motor nerves and may cause paralysis or loss of muscle control.)

People who have motor dysfunction right from the start, or who develop it early, such as in CIDP, generally have a rougher time down the road, unless they can get effective therapy that works for them (such as ongoing IvIg or plasmaphoresis).

Realize, sad to say, that we're only talking general population trends here; neuropathy is so variable that we're all sort of samples of one.

[QUOTE=glenntaj;718991
People who have motor dysfunction right from the start, or who develop it early, such as in CIDP, generally have a rougher time down the road, unless they can get effective therapy that works for them (such as ongoing IvIg or plasmaphoresis).

So since my nueropathy is sensory motor, with demylinating and axonal features and is idiopathic at this time, does that mean it could get worse since they have not found the underlying cause? I am only 41 years old and really scared to think this could be with me for the rest of my life.

no one really knows Lynn. Glenn is talking about generalities and possibilities within each group. As an individual with your own genetic makeup, general overall health, lifestyle, exposures etc. its impossible to say what exactly the future holds. There are some diseases such as diabietes or paraneoplastic cancers or celiac where if you dont take care of the underlying cause of course you will get worse. But for no know cause its really impossible to know. Just do what you can to provide a healthy environment for your body to get better through supplements, eating well, exercizing and reducing stress when you can.

Wish I knew where mine was heading, sensory stuff,, gloves and sock stuff,, I could shove a knife through my hand and not feel it but It will react to cold,, actually both hands are like this,, slowly losing the ability to walk without stumbling, arms dont feel like there mine,, they just do whatever they want,, they flop at night,, well flop isnt the word,, they fly around on there own,, but I am not doctor and they just tell me stuff that I have no clue anymore