[DHCKris]

Hi, all:

I've been struggling with minor, annoying symptoms for the last five years. Since I'm young and definitely have anxiety issues, a lot of them can be explained away by that. I'm writing this mostly for my own sake, but I would love input and ideas of how to proceed. I just want to be told that everything is okay.

My first symptom was ED. It might not be related. When I was 19, my sexual function diminished seemingly overnight - I was seeing a new girl at the time and was desperate to please her, and it makes sense that in the moment I would develop ED. But the ED never improved, not even when I was alone. I lost morning erections. This improved over time but to this day, my sexual function has not been restored to what it was when I was a teenager, and I am definitely not satisfied with the quality of my erections but they do happen and I have had healthy sexual relationships.

Soon after I started to have frequent body-wide fasciculations which persist to this day.

The second and main symptom is the tingling. The numbness. It started in my scalp at age 21. I hate constant tingling in my scalp for two weeks. I had a friend who had a brain aneurysm at 18 and I freaked out. I started to feel dizzy, my hand would clench, I was get sick - I'm realizing now these were probably panic attacks. The doctor said my shoulder muscles were INCREDIBLY tense - that this was caused by stress and was causing the numbness. After two weeks it went away and has never come back for more than a few seconds (when I'm stressed).


I then started to have tingling in my lower legs, like my calves. This was very slight and very occasional. Then, I started to wake up every morning with my big toe and second toe completely numb until I walked a little bit. This last for a week, and then it stopped going away completely. It no longer was completely numb, but it was a constantly tingling in these toes that persisted for 4 months.

At this same time I was having urinary retention - I've always had a shy bladder, but I started to feel like my bladder was PERMANENTLY shy. I would have episodes of urinary retention for weeks at a time, then I'd get better, then bad again - seemingly at random. I had a urodynamics study done (uro said he was worried this was MS or some other neurological disorder) and he felt that mine was not a neurogenic bladder. He said I had the bladder of someone "afraid to urinate," and he said he often sees this in women who have painful UTIs and learn to avoid urination to avoid the pain. He prescribed biofeedback physical therapy to gain control of my pelvic floor muscle so I can untense it. He felt it had become tense through anxiety and stress and that was causing my symptoms. The physical therapy worked and these symptoms improved.

Eventually the tingling in my toes subsided but it left in its wake a permanent numbness on the outside of my big toe. This has been permanent for three years. One year ago, it appeared in the other big toe, without the tingling that accompanied the first. I still get tingling through my legs and thighs. I also strangely get tingling in my thighs when I urinate - I stand to pee (as a male does) and tingling in my thighs lasts for the duration of my stream. No idea what that could be. I get tingling on and off in my right knee (same leg that had the firsy toe problems). My toe numbness is sometimes accompanied by burning and cold pain. My toes are also cold to the touch.

My neuro thinks it's a small-fiber neuropathy but I'm not diabetic, my B12 levels are naturally pretty high, and I have no food allergies. I'm also fairly young and do not have the severe pain associated with SFN. I don't want to believe it's a neuropathy because I might eventually HAVE that pain, and that scares me.

I've had EMGs, bloodwork, MRIs - nothing. I have somewhat severe scoliosis, but my ortho doesn't believe that could cause numbness in toes. Even if scoliosis were causing a nerve impingement (which MRI confirms it isn't) it wouldn't affect both toes, because it only curves to one side or the other. I'm wondering if all this is just because I'm sleeping funny, or if its my shoes - the toe symptoms roughly correspond to buying a new mattress and new shoes, and I often sleep in positions that leave my arms and legs numb upon waking up. I also suspect I have BFS. A podiatrist noticed three things - my hamstrings are very tense (I don't stretch and anxiety and fatigue keep me out of the game as far as exercise), my reflexes are quick, and my gait is strange since there is a very, very, very slight foot drop issue and no other doctor who has watched my gait has noticed this, though other people have (but altered gait is apparently common in scoliosis patients).

I just want to know why my big toes are numb after three years... it scares me that I might have some sort of progressive nerve damage that might cripple me down the road. I'm young, anxious, and just want to be normal. What should I do?