Hi everyone,
I haven't been to the forum for a couple of years, so had to re-register.
Does anyone have there PN progressing up the limbs? I started with the burning feet and hands, it has been almost 30 years. I started having the sensation on the top of my feet and ankles, now it has progressed up to my knees. Likewise it is progressing up my arms too. Another new twist, I find that I am having painful finger joints, I saw a Ruemitologist to get checked out for RA, but the tests came back negative for it. We think it may also be PN related.
The first line of NSAIDs did nothing (duh) the Gabapentin just made me forget everyone's names, and give me tachycardia, so now I am taking Piroxicam, but since I do not have inflammation, it is another failure.
My father had PN so bad, toward the end of his life, he lost the feeling of his legs from his knees down, he said it was like a fuse burning up his legs. He also had widespread muscle stiffness' (which I also have) so I am thinking that it maybe small fiber Neurapathy. I was thinking of FMS, but the Ruemi said that "only women get that", and when I told her that my father had the same symptoms she said "she did not know my father"... I like her though, she is spunky.
I have tried all the usual things over the year, but I am looking into all the options.
Sorry to ramble on...

--would not result in muscle stiffness, as the small, unmeylinated fibers only control the sensory functions of pan and temperature . . .

Given what you've said about your father, you might want to suggest a work-up for known hereditary neuropathies:

http://neuromuscular.wustl.edu/time/hsn.htm

http://neuromuscular.wustl.edu/time/hmsn.html

I have hereditary neuropathy, and it has progressed to my hips and above the elbows. I have both small and large fiber neuropathies, both fairly advanced with extensive and visible muscle loss. Motor symptoms were evident in childhood, clumsiness, odd, high stepping gait, high arches, inability to run, etc.. Sensory symptoms started around 30 with numb toes. I am 52, walk with a cane, and cannot move my toes, can barely move my ankles. Mine is axonal, in that the axons are affected first, CMT type 2, we did not test for subtype.
If your father had this, I think you have your answer. I did not have access to my father's medical history but it does seem likely based on what little I know- half sister in leg braces, self medicating with alcohol, inability to get out of a chair unassisted, etc.

I have SFN confirmed via skin punch biopsy on my ankle. It's severe and I have no A and C fibers left in my feet. Says they are 'devoid' of these fibers. Nice right ?

Anywho.....I've only had this for approx. 1 year and within the last month or two it has gone from my feet and hands to both legs, upper right arm and then to both arms. I'm also experiencing pain in my teeth, jaw and now my tongue is numb.....the face issues I experienced during chemo but they went away until now. But I have no problem with my muscles as far as I know.

Not sure if this info helps but I wish you the best of luck and please keep us posted.

Debi from Georgia

I had read the muscle tightness somewhere in my search, but you are probably right... My PN has been only sensory, I have exceptional balance, and full use of my limbs, I just have the pain. Well, I do get some temporary numbness in my hands, arms and legs, but it is susually after one of those afternoon naps...
I did a lot of surfing in cold water when I was younger, my fingers and toes would be frozen open after several hours in the ocean, I wonder if this contributed to my neuropathy? I have always been sensitive to vibrations form power tools, it would cause pain and itching of my hands similar to when I would thaw them out after surfing.
Sounds like I should follow this up with another Nuerologist, and see what the cause. It is a little frustrating as none of my choices actually have cures or treatment options, except pain masking drugs. After all these years, I am pretty sure it is not reversible at this stage of the game.
It sounds like my father had both small and large fiber involvement, with the legs going numb.
Thanks for the input!