Burning skin
Posted , 4 users are following.
My husband keeps getting patches of burning skin in random areas, first it was upper chest near arm pits and on his left hand with weakness in arm and hand, he went to neurologist they did lots of blood work, spinal tap and his CSF was elevated. They did 5 consecutive days of IVIG and it seemed to gradually take away the burning skin but was left with surface numbness on his left hand. That was 5 months ago. About 2 weeks ago he started having burning skin in a strip low abdomen, he now has a small numb patch, then last night he started getting burning skin on his back below shoulder. His neurologist is doing another round of ivig treatments. Their only diagnosis is CIDP even though his nerve conduction studies were ok, but they are going off the elevated CSF. Can this be anything else? IVIG treatments are very expensive, he was treated for CIDP 15 years ago and he did have burning skin in various places then but he was also weak at that time, it was hard to determine what was going on since he just had low back surgery. I'm just afraid for him but what a right diagnosis. The ivig do seem to work slowly but they seem to work so far. Any ideas of anything else it could be would be great.
0 likes, 3 replies
0208mad michelle64951
Posted
Hi Michelle. I have suffered with burning skin fir five years now.After seeing seven diifferent neuros i was finally diagnosed with a rare disease called non length dependent Small Fibre Neuropathy. It is invisable and the rarest type does not show on any tests. If you want more info look it up or if you would like send me a private message and i can leave you my number.Only help is pain meds. But the good news is it can go away as mysteriously as it came. So there is hope.
nunciate 0208mad
Posted
Can you email me at alan.wells@usa.net? I am interested in what you have figured out on this.
I have had tingling, burning and throbbing sensations across my entire forehead for about 4 years now. I have had multiple MRI/MRA performed over several years and my neurologist has found nothing. She started me on something called Oxtellar XR recently because the issue became worse to the point of being very distracting. It isn't painful just constantly there. The medicine brings the issue down to ignorable again but it is still there all the time. I am have been searching for someone who specializes in facial nerves but have had no luck here in the Dallas, TX area.
ken355 michelle64951
Posted
I get that in different places too...seems like it comes on in the late afternoon then fades away later then does the same thing again the next day.. went away for along time then just came back after an anxiety episode...let me know if you find out anything..