[Fran E]

So - have had PN for 4 years now. Spent the first 3 years frantically looking up everything related on the internet, having every blood test and nerve test known to man including nerve biopsy, 2 lip biopsies, 3 MRI's, a muscle biopsy, a spinal tap, etc etc. Haven't been on this site for almost a year now as I have almost completely given up. Nothing has come up positive except demylenation but not enough for a diagnosis. I have seen countless doctors and they are all very nice and send me for more and more tests - but NOTHING. Thank goodness I am in a slow decline, not a rapid one, but still - aarrgghhh. I have been ignoring it for the most part for the last year, but everyt time I see my neurologist and go for another round of pointless tests I go into a bit of a tail spin.

So - I am not expecting anyone to tell me anything brilliant, just having a late night meltdown :-)

[mrsD]

Have you had genetic testing for inherited PN?
http://neurotalk.psychcentral.com/thread121564.html

Are you taking any supplements? Do you know your B12 reading and Vit D3?

Slow decline of mitochondria, may not show up in muscle biopsy.
As I understand mito damage, the sample must be done a certain way, etc. So it is possible you have some mild mitochondria damage that is ongoing.

I would look to diet and do gluten free for about a month, and see if your start to notice any improvements there. Gluten intolerance is sneaky, and difficult to pin point with blood testing sometimes. I have found for myself that certain foods can start a burning attack that is very intense. And when I change that, the burning goes away. Nightshade veggies do it for me and some spices, and some tomato products.

I know it is frustrating.. we all experience that feeling.

[nide44]

Dx'ng is a process of evaluation with 99.9% of the tests showing negative.
Everything's OK.
That's why he Dx is subjective, assessing many factors,
and eventually coming up with idiopathic much of the time.
Its a long process (and an expensive one) because the causes of PN are elusive,
but the symptoms are not elusive, only the over 200 known causes
and which to use of over 75 different meds to treat it.

[Sheltiemom18]

Hi,

Can understand your frustration that a cause for your PN hasn't been found. Mine began in January 2010 and also had the gazillion blood tests and spinal tap and skin punch biopsy. Dx'd with Sjogren's a month later - a known cause of small fiber and other neuropathies.

As there's but so much by way of script treatment that can be done and if these don't work - then what?

I began taking the supplements suggested here by MrsD last summer and by late fall/early winter 2010 began to notice improvement. At this point can honestly say I believe they've helped tremendously - not that the neuropathy vanished but there's no burning anymore, just skin discomfort. Compared to most of last year, it's like night and day. In my case, the Rx "silver bullets" were intolerable.

Botton line: Not keeping either the upcoming neuro or rheumatology appointments as nothing has changed except for the better and can't see a good enough reason to fork over the co-pays at this point.

Best wishes,

Sheltiemom