Originally Posted by Usif

Hello there,
I am a 27 year old male. My symptoms started about 2 months ago. It started with my left toe being numb and tingly. It then progressed to both feet and hands. Now both of arms and legs up to the thighs have that tingly sensation throughout.

Originally Posted by Apex Clipper

Hi Usif,



While I cannot speak to your diagnoses or future prognosis I'm responding here because your story is near identical to mine and I just joined the forum two days ago also seeking information.



I had the same progression in both feet and hands with it now progressing up my lower legs and a hint of now progressing to the forearms. I was also always healthy all my life and paid attention to my diet. I had the same blood work-ups, brain MRI and just recently a second neurologist performed an EMG test which was negative, at which point he confirmed SFN with cause unknown. I'm awaiting results of autoimmune & thyroid blood tests.



The first neurologist states there are no more diagnostic tests available for me, however after some research that does not appear to be accurate so that can be challenging also. You may have to continue to press for all possible diagnostic avenues and be your own advocate even when others are doubting or dismissing you.



I can relate to your stress and fear of where this may be heading, at the onset of this I started imagining the worst. Would I eventually be incapacitated? The frustration mounts because doctors can't be sure of anything so you can't get straight forward predictions. Yep, it's easy for others, even family members, even some doctors, to not fully understand the affect of this condition as they can't see any outward appearance of the disease. In some cases some people won't even believe you and paradoxically the more outwardly stressed you appear some might start pegging you as being psychosomatic. My advice would be to ignore them, stay strong, stay focused and work with your doctors.



Perhaps being significantly older than you I've had more time to practice dealing with stress. As best you can pay attention to your breathing, when you feel the anxiety make a conscious effort to breathe slow and rhythmic. Get up, move around, go outside for some fresh air. I know it's easier said then done but try not to constantly run worst case scenarios in your mind, it just becomes a negative feedback loop. With practice you can calm things without the meds. I try to remind myself that none of my worrying will change the outcome so I try to manage things as they come, one step at a time, the best I can.



Have your doctors prescribed anything to try and relieve the SFN symptoms? I was prescribed gabapentin, being a health nut of sorts I don't like taking pills but it has significantly taken the edge off the nerve symptoms without any noticeable side effects. If you can mitigate the discomfort that goes hand in hand with reducing stress, at least it has for me.



Stay strong and good luck!

Originally Posted by janieg

From experience, I can tell you that the anxiety and worry you have over this is magnifying your symptoms tremendously. Of course it's a natural response, but do everything in your power to try to calm yourself down.



When my neuropathy first hit, my stress and anxiety level went through the roof. I now know how much that was just making a bad situation 10x worse. And when I get under stress now, it's literally like a switch has been flipped. My symptoms which may not have been bad before immediately flare. I assume it's my overactive nervous system's response to cortisol...or something like that.



I'm not one who can meditate, but I do find that deep breathing has a calming influence on me when I'm riled. Try to find some means of lessening your anxiety. You'll find this forum to much comfort as you read how some people have lived with this for 20 years. I've had the neuropathy for 3 1/2 years, and while the symptoms have morphed and will always wax and wane, I am better than I was initially. They also have not affected my motor nerves in the slightest yet...it's all sensory.



Like you, I've avoided the gabapentin. I took it initially, but stopped when I decided it would be better to see if I could live without it. It's nice to know it's there should it get worse, but I've done fine without it.