Quote:
Originally Posted by JimJamJones
Hey, no i havent had the biopsy. My doctor didnt see the use of it, but recently ive been thinking i should go back and push for it again.
Regarding the fingertips, the feeling is a quite pronounced burning sensation but only when i use my fingers to tap or push something. I notice it most when texting on my phone or using a computer mouse/ keyboard. I dont have an reduced sensation or temperature threshold issues though and also my blood and EMG tests came back as perfect.
What have you tried so far to improve things? any supplements? diet changes? did anything help?
I had suspicions alcohol made things worse for me but recently ive decided its the lack of sleep that goes after alcohol consumption - (though ive since i reduced my alcohol consumption in any case). Ive also tried lots of supplements but to no avail really. My next plan is probably to go gluten free for a substantial period and see if that helps, if it doesnt though im starting to run low on ideas...
|
I think you should really push for the skin biopsy. It seems to be the best diagnostic tool for detecting SFN, and it's quite specific. If you're below the 5th percentile, they'll use it as evidence of SFN, but sometimes it's even more clear--I was well below the 1st percentile and so it left no doubt that there was a problem. It also gives them a physical picture of the nerves, so they could see that, for example, the neurites of my hair follicles and blood vessel were actually in better shape then the nerves of the epidermis.
My doctor requested the biopsy after my QSART test came back abnormal as well. I don't know if that test is an option for you, but maybe it's a place to start.
I think your 'burning' pain is more indicative of a classical SFN. I am glad that I never had this. All the hyper-sensitivity that I had in my skin was most similar to the feeling you get after a mild sunburn when fabric feels coarse against your skin.
My symptoms did get progressively worse for years, but in the last 6 months or so I can't say that things have changed. If anything they may have improved very slightly. Generally, things were always a bit up-and-down, and I often appreciated that exercise (e.g., running a few miles) made things worse temporarily.
As a result of all this I have definitely tried to improve my health. I've always been very active, but when this started I was a bit out of shape. I don't know if it helps, but it certainly made me feel better overall to be going to the gym 6-8 hours a week and I completely cut 'added sugar' out of my diet.
My vitamin D levels were low (17), so I take 4000iu per day. For a while I took a lot of B12 and a spectrum b-vitamin, but it seemed to interfere with my sleep and I never noticed any improvements. I also cannot tolerate Folate so that was a short-lived experiment as well. Basically, I don't think anything I've done has made a difference.
Because I had that sudden onset of alcohol intolerance I mentioned, I basically stopped drinking for a few years. During that time, even a 1/4 of a beer knocked me out pretty hard, but now I can handle it much better and I probably have 4 or 5 drinks a week on average. I've never noticed anything change as a result of drinking.
You could go gluten free, but I think a better idea is just to have the test to see if you have tTG antibodies.