Hello all you fine people,

I am going to be very honest about my history and understand some people may judge me for that, but only ask that you appreciate, I have cleaned myself up completely and wanting to fight whatever is happening to my body. I have not seen a Neuro yet and have only ‘self-diagnosed’, but would appreciate opinion as to what some of you may think is happening. This has scared the **** out of me, I’ve lost my relationship over it and had some pretty dark thoughts in the last few days. Please help if you can.

I am a 33 year old male, 185lbs and I think I am feeling the onset of some form of Toxic Polyneuropathy, possibly from drug or alcohol use. Even if three doctors (not Neuros) have said they didn’t think so. I have had to fight to get my Doctor to refer me to a Neuro. I don’t have insurance, but am paying for a private initial consultation as the waiting list here in New Zealand is about 6 months I believe to see a Neurologist publicly. I have spent the last few days reading some of the hundreds of posts in this forum and feel I have a fairly good intermediate level of understanding so feel free to get technical if you wish.

So here goes my honesty bit. Over the last few years, I have used, or abused, is probably a more correct description, Amyl/butyl Nitrite (also called poppers, rush, locker room). Which for those who don’t know, is an inhalant sold through sex shops to increase pleasure during sex. It is a vasodilator. (expands blood vessels and drops blood pressure among other things) Unfortunately, I developed a bit of a dependency on this and have used it many many times over about the last 7 years. Sometimes weekly, sometimes not for months at a time. But the exposure has been long term none the less. Of all the hunting and research I have done over the last few months on the net(and I have searched !) and asking my Doctor, I have found no information long term abuse effects. Only the short term, transient effects, headaches, feeling a bit off balance etc and my doctor has told me continually not to worry that I am just anxious. This is the same stuff doctors used to use to treat angina as its vasodilation effects are useful for the heart, but probably not to the degree that I have used it. (sigh)

I stopped using this in May 2009 (5 months ago). I have also used other drugs over the years socially, but never had any dependency on them. Among them, Ecstasy, Speed, cocaine and Nitrous Oxide on the odd occasion. I know Nitrous Oxide is among suspected causes of some Neuropathies, but it has been about 2 years since I touched that. I have also drank plenty of beer over the years. Sometimes two beers after work, sometimes ten. I would not say I was an alcoholic, but I definitely drank plenty. Could it be Alcoholic PolyNeuro? Or maybe a combo? Please read on....

So with that history out of the way. I shall list my symptoms.

About 4 months ago, I started waking with my left arm little finger going to sleep (Ulnar nerve) This was diagnosed as simply a nerve compression issue, I started sleeping with a towel around my arm to keep it straight and it seemed to help. Also, if I shook my arm out, the numbness would abate. I did some reading and thought I’d better have a diabetes test. I passed a GTT and there is no sign of diabetes.

My Kidney function has been down a little though with the last four months eGFR’s being 60,58,81 and 71. (Normal is supposedly over 80????)

My B12 was 499pmol/L in July.

I have also had Ulcerative colitis for 10 years which is kind of under control. I had a couple of flares right before all this started around May this year for which I had a couple of short courses of Prednisone. I was taking Pentasa for that prior to this starting, but I have not read anything about Pentasa being toxic.

The latest major symptoms that I am worried about which started two weeks ago were slight pains in my fingers. This felt like no pain I have felt before. Not because of the severity of the pain, it just didn’t feel like conventional pain (difficult to describe to a doctor who just thinks you have anxiety). Sometimes a sharp throb, sometimes an ache. Not always there, but it comes and goes.Not a joint pain, def feels like a nerve pain. Happens in both hands. I have felt an ever so slightly similar pain in my toes, but nothing much as yet. Then a few days later, my thumb started burning and over a couple of days, the burning started to move around my body. I have felt burning on my face, my arms, my legs,my scalp, my ears, my neck, my back. This also comes and goes. My ears & forearms are feeling a bit burny right now in fact.

Parts of my other arm/hand has started going numb now too unless my arms are strictly by my side whilst sleeping. This is starting to concern me, like it is progressing rapidly and if I don’t ‘do something’ to stop it, I’ll start losing strength or other things will just continue to go wrong??

So my questions are. What does the ‘pain in fingers/intermittent multi focal burning/arm nerve compression numbness ’ type Neuropathy involve? From what I can tell, it does seem like a Polyneuropathy of some sort. I’m hoping I have not done irreversible damage and that the nerves may heal? Is that being hopeful? I am not taking any drugs or drinking any alcohol at all (Alcohol only stopped in last two weeks) and yes I realise how totally stupid and disrespectful I have been to my body, just hoping it’s not too late.

I have not noticed any weakness anywhere, no other numbness apart from the arms from compression at night. In fact my feet seem fine. No balance issues. The Doctor did a basic test for hand and finger strength, all fine. I do get fasciculation’s sometimes around my body, but I have had intense health anxiety since this began 4 months ago and I believe the twitches can be attributed to that. I’m hoping there is no motor involvement. My Blood pressure was 120/80 the other day and to look at me I appear in great health.

As I said above, I am going to see a Neuro for the first appointment in a little over a week. I am having lots of bloods done this coming week. Heavy metals etc, Full blood panel etc

One question I would like answered is, if I am no longer using anything or coming into contact with toxins, why would this start progressing now, months after I have stopped? How does that side of it work. Have I done damage that I am only just starting to see the result of now, and why would it continue to progress? I know these things are unpredictable, but I am young, and I’d like to think I can bounce back. What are the chances this will settle, or maybe reverse with no further abuse?

I know this has been long and complex, and it might be easy to just write it off as a text-book-toxic-Polyneuropathy-go-and-see-a pain-management-specialist. But I am determined to do what I can to stop or reverse this in its tracks. I will post more detailed results as I get them, but I really would like some opinions before (and after) I see the Neuro. Thank you in advance for taking the time to read this and offering any opinions. You seem to have a great community here and I’m glad I found it. Bless the internet !