I suggest that you check out www.lizajane.org a site of worksheets compiled by NYCSilk in her own quest for diagnosis. Be sure to get copies of your tests and summaries of all MRI's and nerve conduction tests. It can help you keep track of the testing that should be done for a correct diagnosis. Second from last or near last should be an extensive blood panel and spinal fluid exam. Very last, and often not necessary by insurance companies would be nerve biopsies -from what I've read by them, they are going w/a sort of 9 out of 10 rule being enough for diagnosis and treatment.

IF your neuropathy is 'spreading' still, I urge you to get your records and seek out a second opinion, or even a third. That is what I did and my 'PN' diagnosis was changed to CIDP. As a result I receive IVIG [intravenous immunoglobulin] a blood product for an auto-immune neuropathy. These infusions have stopped the spread of the numbness, and while it doesn't eliminate all the PN symptoms, it certainly helps a LOT. It's expensive tho-I am very grateful for my insurance!

The fact that your problems come and go tho, that's one I'm not familiar with. Altho my overall symptoms have 'good' and 'bad' days. they don't change from 'spot' to 'spot' like yours.

Keep in mind that often it's your insurance company that limits the extent of the tests you go thru. It's up to you to assert the need to get the right diagnosis. OR it could be that your docs just don't deal with neuropathies all that much. Either way, you really should get some new views of your problems. I hope this helps! - j