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ricketyrose
09-15-2009, 06:41 PM
I have always had neuropathy as my cheif complaint maybe because it is the scariest. I had guillian barre syndrome 7 years ago and have had MRIs that showed cervical lessions and EMGs showing demyelination. my neuropathy is ascending, symetrical and peripheral. it also relapses and remits and seems autonomous from the other symptoms. I was inches away from a diagnosis of CIDP, which is like the peripheral counter part to MS that effects the central nervous system, when the ANA came back possitive after 7 years of tests. the doctor thinks it might be a red herring but wants me to see a rheumatologist before he starts with expensive IVIG treatments. the thing is that lupus does fit. the unexplained fevers, the different bouts of pain, swollen lymph node. I had always wondered why outside heat made me weak but hot tube heat did not until i thoought duh photosensitivity.

How can they tell the differnce between chronic relapsing polineuropathy and lupus mediated neuropathy?

WHat are some of your experiences with neuropathy?

does demylination occur with lupus as well?

k2626
09-16-2009, 07:37 PM
Not sure I can help as I have no dx. However, last yr I started getting stinging, zinging electrical type of pains that would hop from spot to spot usually hitting a random finger, toe, ankle lasting from a second to pulsating for hrs before jumping elsewhere. Also staretd to get vibrating feelings in my leg, then came non stop muscle twitching. Sometimes I would get pains were it felt like my feet were being crushed or my ankle was going to snap. LOADS of tests-mri, emg, 40 plus pages of labs-all clear.

In Feb my pancreas became inflammed, still is, have had several scans but nothing shows (thank god as dad died of pancancer) I have a final eus next wk

You mentioned it took 7 yrs for labs to show something? What exactly did it show. Do your pains sound similiar?

ricketyrose
09-16-2009, 10:18 PM
yes I have a good story about the stings. I went to pick up my daughter at her friends house. so I am standing at the door and all of sudden I feel a bee sting my leg but I cant see it because I am wearing pants. so I start running around frantically telling the mom whom I barely know I need to use your bathroom something bit me I need to take my pants off. so I took my pants off in the bathroom and there was nothing, no bite, no bug. I came out of the bathroom and I did not know what to say so I just said that the bug must have fallen out.

I get all sorts of abnormal neurological sensations buzzing, what I call rain drops, bee stings, phantom voids of sensation. If demylination occurs with lupus like it does with other autoimmune mediated neuropathies then here is what I understand is going on. the myelin sheath, which insulates you nerves like any electrical wiring would need, is being attacked by your immune system and without that sheath in tact to keep your the electrical signals in tact they can fire randomly causing abnormal sensations.

I do get that deep bone pain in my ankles sometimes everywhere. it feels like thawing out from frost bite or something. for me I get it right before I get the numbnesss and weakness.

possitive tests were:
5 years ago a lession appear in my central nervous system but my latest MRI revealed no scar or evidence of that lession.
My recent emg showed some disturbance but it confused my doctor because my ncv was healthy
and now a possitive ANA blood test

I have had 4 MRIs w/wo contrast, 4 spinal taps, 2 emgs, 3 rounds of the blood tests, 2 ct scans, 1 vep all over 7 years and other then the mystery lession I am just barely showing anything. and my neuropthy has damn near paralyzed me. I know with out a dx sometimes you may fell alone in this and at least I feel like others think I am making this up. I detect condecention in some peoples voices so its hard being in the middle of nowhere on planet pain. dont give up. and I wont either