Newly diagnosed. Small fiber neuropathy
 

Hi everybody. I am a new member and as the story goes with many like me it seems, after rounds and rounds of testing for my symptoms, I have recently been diagnosed with idiopathic s.f.n. I am a male in my late 30's and this came on pretty suddenly and aggressively (tingling burning numb, feet and hands, hot and cold spots throughout my body - is it raining? know that's just my skin- dizziness, migratory pain and headaches and fatigue that comes and goes) in April and its now June and I have pretty much zero improvement. The latest discovery that the two neurologists I go to have noticed that my copper, ceruloplasm and urine copper were all low and they have started me on copper replacement therapy for the last 2 weeks (btw, no change in symptoms, in fact have felt worse). The levels were only mildly low in the case of copper and ceruloplasm but very low on the 24 hr urine copper test which they believe means my body has been trying to replete the levels for some time. Has anyone with sfn here looked into this? The next step for me is a spinal tap to check the CSF and likely the iVIG route. Also be curious if anyone else has done this in idiopathic s.f.n. with any positive results?

Thank you all.

Hi franklin76
Welcome
I replied to you on the other thread you posted on: (here's a quick link)
http://neurotalk.psychcentral.com/thread43699.html

If you want to track the threads you post on (to find them quickly later) click on Thread Tools on the bar above and then click on Subscribe to this Thread - make sure you click also on the Add Subscription button and the thread will be added to your User CP

Hi bluesfan. Thanks for replying. I am struggling finding your response however as that thread had a million replies. Tried to do it through search but not having success. Apologies but if you could repaste here as I learn and get up to speed that would be great. Thx!

Hi and welcome, I know my friend who says her dx is idiopathic, has gotten nice improvement since taking grape seed extract now for 3-4 yrs...she is off neurontin and now talks about grape seed ex to many of her friends, she has her adult daughter on it too for general overall health. This friend thinks her nerve issues are from taking statins for 30 yrs and could be so as I know of the damage from those statins, but I think too there is diabetes involved, as she said once she was borderline...

I'm head to 20 yrs on OPC'S, which for me are pycnogenol and then a year later grape seed extract, so my prime OPC is grape seed ex.

I can't say enough about these OPC's and have posts in other areas here. Do your research. I deal with femoral nerve damage from hip replacement and getting some relief with a couple nerve supps I've discussed here lately....inosine and sphingolin.

Welcome franklin76. :Wave-Hello:

Great to meet you!!
 

Thanks for this everyone. I will keep you all posted on how things are going in my follow ups. Tough to manage this thing as a father of a few little ones! Hope things turn around at least a little.