Help from you experts
 

Hi, I am new to this forum and have been reading many threads, very helpful. I recently started having neuropathy symptoms and wanted to get your feedback on what I should be doing (if anything) I'm not already doing.

Me
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42 year old man, pretty health/in shape. Regular exercise at gym (treadmill/weights). Only prior issues were Bells Palsy 4 years ago, lasted 3 months. Do regularly crack neck, excessively I believe.

How it started
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-Nighttime, stomach sleeper, started noticing tingling/numbness in my arms. Wrote it off that I was just pinching them and ignored. Has lasted probably a year, not keeping track.

-Right around Thanksgiving (6 weeks ago or so), I noticed my right hand/foot tingling/numb when driving.

-Slowly worsened, especially when typing at work, right hand but I use the mouse with my right.

*SYMPTOM* Cold feet, hands, especially when cold environment.

*TEST*: Got blood work done - NORMAL (B-12 fine, no Lupus, Lyme, Diabetes, etc.

*TEST*: Got full MRI - Head NORMAL, Lower spine NORMAL, only findings in neck were bulging disc, arthritis. Saw spine specialist who didn't see any nerve pressure from my neck but couldn't 100% dismiss it. Said to see PT and work on neck position, shoulders back, etc.


*SYMPTOM* Lightheadedness, tingling various places (left/right, arm, leg). burning sensations (head, neck, ear, leg). All of these can come and go hour by hour, day by day. Had one day where I thought I was about a 9/10, then the next a 4/10.

*SYMPTOM* started to feel aches, especially in joints (elbow/knee) but also left side check ache.

What I am Doing Now?
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Taking B-12 (under tongue) 5000mcg daily/morning.
Taking alpha-lipoic 300mg morning/night
Tried accupuncture, worse the next day, better after. Hard to see if correlated.
Neck stretch/exercises, working on posture.
Tried Gabaepentin
Have an EMG test scheduled for tomorrow.

Questions
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1. What should I be doing/trying?
2. I tend to worry a lot, anything reassuring you can tell me?


Thanks in advance to anyone who responds. I know it can be a pain to read long threads and take the time to reply.

Hi, I've heard about this work many years ago but never went for it, my neck has arthritis but I move it etc...my neighbor is looking into this work as her neck is a mess from a surgery over 5 yrs ago and rehab stay which she claims her neck issue is from. She cannot move her neck and pain and numbness down both arms/hands.

This work is targeted to the atlas aka C1 in the neck.

http://www.nucca.org/

Do you take statins? A friend just talked about tingle in her hands and she said YES she is on statins for 2 yrs. Sleep on stomach? Ouch.

It could still be your neck even without definitive proof. I have a similar situation with my lumbar spine. I'd definitely continue with PT. If you're not happy with your PT you can try another.

I'd check out carpal tunnel.
Are you or were you on any prescription drugs? Antibiotics?

Suggestions:
Give up sugar and alcohol at least for now. Probably change your diet although I don't know what you eat. There are a number of posts from members about diet and PN and what has helped.
Start keeping a journal to try and get a handle on your triggers.

Hope this helps.
Pinkynose

I thought it was my neck too, and so did the doctors until it spread to my feet. Same here with stomach sleeping and waking up with numb hands. I have always been a stomach sleeper and never had that issue. That was what happened at my onset. It crept up in such a subtle way that I thought it was just something that would go away. Then it went to my feet. Then my feet and hands would get cold and numb. I won't go into the rest of my story because don't want to alarm you. Not every case is as bad as mine was. Finally neuros in NY figured it out. Small fiber neuropathy with autonomic involvement, but they don't know how it happened. I think you should get a skin biopsy to rule out SFN if you have no deficiencies, diabetes, and the rest of your blood work is good.

Hi,

I'm in the same boat as healthgrrl: small fiber neuropathy (SNF) with both sensory and autonomic effects (dysautonomia). Lots of other possible symptoms with dysautonomia: rapid changes in blood pressure and heart rate, insomnia, digestive issues, excessive thirst, dry eye, strange reactions to temperature......the list goes on. It could be causing your dizziness and cold hands/feet. There is an excellent website DINET (Dysautonomia International) that will address anything you could possibly want to know. It is a rare disorder and many docs have never heard of it. My first neurologist was scarily ignorant!

My disorder is apparently the result of drug toxicity (antidepressants..serotonin syndrome). This is why people here are asking about your meds. Certain antibiotics and statins can set it off.

I just had a bunch of blood work done to determine whether I have an underlying autoimmune disease....which can also cause all this. Like you, my numbness/tingling came on suddenly and are progressing. However, other dysautonomic symptoms are improving.....who knows what to think?

In US, insurance companies insist upon an EMG (no picnic) before allowing skin biopsies for SNF. My EMG was normal, but the biopsies were positive.
The two neurologists I have seen, including a national dysautonomia expert, were basically useless in generating some sort of explanation/treatment plan. My rheumatologist is great....no help because I think it is unlikely there is something autoimmunilogical going on.

If anyone knows of a great SFN neurologist in NYC, I would love the reference!

My treatment...supplements (l-lysine, magnesium, CoQIO...there are others suggest ed here). I have done yoga for years, but my practice is hampered now because of of palpitations and dizziness. I'm seeing a cardiologist Monday. No "one stop" shopping with dysautonomia....but take heart, for you only have a couple of symptoms.

However, I began working with a yoga/masseuse one-on-one...best thing I've done!

I take .5 mg Klonopin for sleep, and I got my hands on some medical marijuana through a friend, which I find miraculous for neuropathic symptoms and pain. Just was made legal here in NY this week, and my PCP has promised me he'll get certified....hope he hurries.

Anyway, no telling yet what is causing your symptoms, so don't worry too much...just insist on the biopsies. Also, just do some reading about dysautonomia....May make sense....

Hope this is helpful!

Do you take statins? A friend just talked about tingle in her hands and she said YES she is on statins for 2 yrs. Sleep on stomach? Ouch.[/QUOTE]
Thanks Caroline, yes I 'used' to sleep on my stomach (albeit 41 years).

Not on statins, no.

Just ordered grape seed extract. How often do you take and what improvement do you see?

hi pinknose, thanks for your response.

I am actually hoping it is my neck at this point. I'd rather know the cause then leave it open-ended indefinitely. I haven't started PT yet but have my first appt in 2 days. Meanwhile, I started doing some exercises I found on youtube, working on posture (forward head position stuff)

no prescription drugs
no antibiotics
i rarely each sugar, no alcohol.

Thanks

Thanks Healthgirl and SylvieM,
Yes I have feet/leg issues too. that's good info on the SFN and will look at that site. I haven't been taking any meds really at all. I did take acyclovair back for my Bells Palsy but the symptoms started way after that was over (6months to a year).

I will say my dad (age 75) had something where he would move his neck in a particular position and immediately become dizzy, even cause a panic attack. He got a cortizone shot and the problem went away. He also had some tingling in his feet and the dr said neck unrelated to feet (maybe still was) but the problem went away. I will say my feet are the least of my concern. Biggest ones are sharp chest pain (left side) and tingling/cold hands.

I have started yoga also, that's good to hear. of the symptoms for SFN, i'm not sure I'm having many now

rapid changes in blood pressure and heart rate < no
insomnia < no
digestive issues < not really, sometimes low appetite
excessive thirst < no
dry eye < no, did have 3 days one eye burning but went away
strange reactions to temperature < cold rooms make my hands feel worse, I crank the heat now.

Was the cause of your Bell's Palsy ever determined? Did you have a virus at the time?

No, cause of Bell's never really identified, not sure it ever is. I went on acyclovair and steroids and eventually faded but it may have just been time.
Had no virus (cold symptoms) at the time.

As I'm typing this (night) I am very fatigued and lost my appetite, feeling very down. Seems to happen at night. I took 100mg gabapentin last night, might again but didn't think there was any effect.

Thanks for all your postings, helps to know there are others out there for sure.