[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?

[Littlepaw]

Hello and Welcome to Neurotalk Support Groups,

You will find this a great place for sharing and support.
I am sorry you are having trouble finding answers and help. It is frustrating going through all that work up and not finding clear information. Nerves are very sensitive to compression though, so without clear findings and you feeling that maybe your mattress or shoes contribute maybe it is time to switch out and see what happens. Waking up with numb areas every day is not good.

You might find the following areas of the forum of interest.

Preipheral Neuropathy

Men's Health

Neuromuscular

Anxiety

There is a Search feature at the top of the main page and an FAQ that will answer many common forum usage questions.

I hope you get relief and answers soon.

[DHCKris]

Thank you. I'm just frustrated because my health anxiety has always been extreme. I became a shut-in and recluse through my childhood and teen years because I was always convinced I was sick or dying. I've convinced myself I've had all manner of diseases for seemingly no reason: HIV, cancer, MS, ALS, Chrohn's... I've convinced myself my retinas would fall out or my teeth would rot out of my face. All my life people, therapists and doctors have patted my head and told me, "it's okay, you're young, healthy, you take care of yourself, you're not sick."

But now it seems by coincidence the guy who was always afraid of chronic illness despite not having any reasons to be chronically ill actually -is,- and it's like my confidence and all of the years of being told everything is okay is like a giant betrayal. I don't want this disease. I can't understand why I'd have it. My family is basically genetically perfect. Most of my family members lived long, incredibly healthy lives and remained active and clear-minded well into their 90s and even 100s. No cancer, no diabetes, no Alzheimer's. I myself have no allergies, no vitamin deficiencies (my b12 level is on the high end at almost 700), no risk factors, no diabetes, take no medication, no injury, never traveled, never even left my house because of the anxiety.

Now I was just finally beginning to tackle my anxiety and my fears and learn to enjoy going out and traveling and now my feet are constantly bothering me. Why do I have this at 24 years old? My neuro says "sometimes neuropathies just happen! if it's just numbness right now, don't worry about it." But I DO worry about it - having numb feet all the time changes the way I walk which hurts my feet and my knees. It gives me increased anxiety. My GP said, "I cannot even fathom why someone like you would have neuropathy. Keep seeing neurologists." but neurologists literally do nothing but tell me that I should ignore it if it doesn't cause me chronic pain. And I'm terrified it will progress and I'll be in severe pain at 30 and never be able to overcome my reclusivness and enjoy my life. It makes me so depressed and miserable.

It just seems like such a confounding coincidence that someone who feared becoming chronically ill would become chronically ill against all odds. Something tells me there's an innocent explanation for these symptoms but being on this forum basically has convinced me that it's SFN and I'm doomed... I just want somebody to tell me, "if your toes have been numb consistently for three years and your legs tingle, it could be something totally innocuous." But even my doc thinks it's SFN now. He said I should see someone to do a biopsy. I'm terrified of confirming that I have SFN and knowing the pain it may one day bring and resigning myself to a life of confusion and regret. I hate this.

[lees]

Was there ever any time since you developed numbness and tingling that you were on antibiotics? If so, that might be the culprit.

[DHCKris]

Originally Posted by lees

Was there ever any time since you developed numbness and tingling that you were on antibiotics? If so, that might be the culprit.

No. I've never been sick and never taken any medication as an adult. I even refused to take painkillers after my wisdom teeth surgery.

[Itneverends]

Have you been tested for pyridoxine toxicity? B6 toxicity. Do you take supplements?

[DHCKris]

Originally Posted by Itneverends

Have you been tested for pyridoxine toxicity? B6 toxicity. Do you take supplements?

Haven't been tested for those, but I've had my vitamin levels checked numerous times. My doc said Vitamin D was low, but not unreasonably low based on the lack of sun at the time (it was winter and I live in a perpetually overcast environment during that season). No supplements until very, very recently when I started taking B12 just in case, even though my levels are very good. Should I stop?

I recently took the advice of someone in the Neuropathy forum and made an appointment at the Peripheral Neuropathy center at Cornell medicine in NYC. Hopefully they can find the culprit.