Yes it could

May 27, 2008 at 9:14 pm


I have a purely sensory neuropathy – diagnosed as CIDP about 4 years ago — after 8 years! It is a pretty rare variant – only a couple of us here with very little/no motor involvement.

The problem with a sensory neuropathy is that it doesn’t necessarily show up on an EMG – you need special tests to be able to get at the sensory damage.

My neuropathy is also very painful, electric shocks, pins and needles, numbness and the like – similar to what you have. It is in my hands, feet, legs and back – it is actually the worst part of it for me…so I take neurontin, oxycontin, tramadol and effexor for nerve pain. I am also taking azathiaprine as a immune suppressant. You need to look for someone who will take this part seriously.

I must say that it puzzled the neuros for awhile. Gareth Parry diagnosd me as a “dorsal root ganglionopathy” originally — and now they have changed it to CIDP. I get IVig once a month – 1gm/kilo over 2 days. It helps with energy; and it used to relieve the worst of the nerve symptoms, although I think that it is starting to loss its effectiveness, which apparently can happen (I have had it for 5 yrs)

The thing is, it may take alot of time to get an appropriate diagnosis, but the treatment choices are fairly narrow for this broad range of diseases, as far as I know – IVIg, steriods, plasmapheresis, immune suppressant therapy and pain meds if requierd. If these have helped in the past, then it surely makes sense to try and keep up the treatment?

It seems like to might make sense to try and find someone who might have abit more experience with these diseases at least for a second opinion? Don’t leave it – as reiterated in this forum, if you have a demylinating neuropathy, the nerve damage will get worse if you wait.

If it is a neuropathy due to other types of things, like vitamin deficiency or heavy metal poisoning – then you need to find that out as well.

Take care and good luck in your journey.