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Old 10-26-2009, 02:56 AM   #1
Kiwiboy
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Default First (long) Post - Please help - is this Toxic PN??? Need opinions

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 !
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Old 10-26-2009, 05:52 AM   #2
glenntaj
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Default Well--

--certainly, many drugs are neurotoxic (and Mrs. D can chime in better regarding your list), and alcohol can be both directly neurotoxic or can cause neuropathy through depletion of vital nutrients.

Given the sudden increase in symptom spread, however, I'd suspect that new toxic exposures (something tainted that you recently took?) might be more likely--and I'd really look into that B12 leel, which does not sound optimal to me (though I'm sure it was not flagged as it was within the reference range----burt many of us think those ranges are set too low in most places; in Japan and some parts of Europe the low end of the range starts at 500 or 550).
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Old 10-26-2009, 07:05 AM   #3
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with any GI issues, you HAVE to consider celiac/gluten sensitivity.....also, yes you are "young", but after 30, the wear and tear are not so easily repaired...and def. that B12 is not optimal..... good luck
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Old 10-26-2009, 07:51 AM   #4
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Quote:
Originally Posted by glenntaj View Post
Given the sudden increase in symptom spread, however, I'd suspect that new toxic exposures (something tainted that you recently took?) might be more likely--and I'd really look into that B12 level, which does not sound optimal to me
Yes, the rate at which this burning has spread is alarming. (within days it has skipped around the place as it pleases) I'm continually told that 'anxiety' can cause burning sensations...I don't think quite like this tho. It is not unbearable just yet (prob half a point on the pain scale), just the fact that something is going on is the worry, and of course, the potential progression.

I only stopped drinking so much beer a few months ago, but stoped alcohol completely only in the last two weeks, so still maybe some potential to be alcohol related. Just would seem strange, as have friends that drink considerably more. The same weekend this started, I did buy a herbal product for 'calming nerves' apparently with no chemicals or 'bad stuff' in it. It is sold at healthfood stores nationwide, so I think I can assume that is safe? I stopped taking it as soon as this started, so only had two doses. Might have another look at it. I did ask my doctor to prescribe me a B12 sup based on all I have read on here, to which he replied, he wasn't going to start prescribing things because I'd read something on a forum. (Grrrrr)

Oh, and something I didn't mention in my intro was that I have bad tinnitus. It could be from playing the drums, or listening to my ipod too loud, but I believe there are possible nerve connections there too? Just thought it might be worth mentioning.

Thanks for replies so far much appreciated. Will get onto that B12 !
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Old 10-26-2009, 07:59 AM   #5
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Originally Posted by pabb View Post
with any GI issues, you HAVE to consider celiac/gluten sensitivity.....also, yes you are "young", but after 30, the wear and tear are not so easily repaired...and def. that B12 is not optimal..... good luck
Thanks pabb, because of my Colitis, In the months leading up to this, I have been following a pretty good diet (apart from the drinking) that includes not eating bread or any gluten containing products (that I know of at least) So I'm guessing I can exclude those possibilities. Although, I know the multitude of problems that Ulcerative Coltis can cause throughout the body, so maybe there is some sort of connection. I thought I'd had my share of chronic disease for one life but hey, it's early days I suppose, I'm doing what I can to give my body a chance, and getting in to the Neuro quick smart. Thanks
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Old 10-26-2009, 08:12 AM   #6
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Pentasa depletes folic acid.

X will affect the brain's ability to make serotonin. This side effect causes many problems with X users. Some articles say it may be permanent.

Speed (Meth) and cocaine affect the blood vessels and heart.
If you are not using these anymore, you might have recovered.
But they can cause multi-infarcts in small arteries depending on the person.

Nitrous oxide may impair methylation chemistry...the only way to test for this is to have a MMA test. Your B12 is marginal. No way to know if it is coming down or going up with a single test.
Folate in food also has to be methylated to its active form.

When people use multiple drugs recreationally, there is a trade off chemically in the body. This varies so much from person to person, that it is hard to predict. Also multiple drug users do not eat well. They lose their appetite, and eat junk food commonly.

People with inflamed intestines also do not absorb nutrients well. This leads to a mess...many nutrients may be lacking in your body because of this. Medical doctors do not routinely address this problem.

You might find some help from a holistic MD, a good one who is affiliated with a teaching hospital.
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Old 10-26-2009, 08:25 AM   #7
Kiwiboy
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Quote:
Originally Posted by pabb View Post
with any GI issues, you HAVE to consider celiac/gluten sensitivity.....also, yes you are "young", but after 30, the wear and tear are not so easily repaired...and def. that B12 is not optimal..... good luck
Quote:
Originally Posted by mrsD View Post
Pentasa depletes folic acid.

X will affect the brain's ability to make serotonin. This side effect causes many problems with X users. Some articles say it may be permanent.

Speed (Meth) and cocaine affect the blood vessels and heart.
If you are not using these anymore, you might have recovered.
But they can cause multi-infarcts in small arteries depending on the person.

Nitrous oxide may impair methylation chemistry...the only way to test for this is to have a MMA test. Your B12 is marginal. No way to know if it is coming down or going up with a single test.
Folate in food also has to be methylated to its active form.

When people use multiple drugs recreationally, there is a trade off chemically in the body. This varies so much from person to person, that it is hard to predict. Also multiple drug users do not eat well. They lose their appetite, and eat junk food commonly.

People with inflamed intestines also do not absorb nutrients well. This leads to a mess...many nutrients may be lacking in your body because of this. Medical doctors do not routinely address this problem.

You might find some help from a holistic MD, a good one who is affiliated with a teaching hospital.
Thank you. Yes, I realise now after so much reading how sensitive our bodies are, and recreational drug use really is a kick in the teeth for a healthy body. Yes I am due to change doctors so now might be a good time to find one who is a little more interested in helping me rather than 'reassuring' me.

I am testing B12 again in the coming tests so will post again when I have those results in.
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Old 10-26-2009, 09:29 AM   #8
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I have just found something I don't know if I really wanted to find. It seems as though I may have 'Non-length dependent small fibre neuropathy/ganglionopathy' as it is distinguished through the early involvement of the face and trunk. Here is the information. Does anybody know anymore about this ? this is very disturbing

OBJECTIVE: To describe the clinical and laboratory features of a painful non-length dependent, small fibre ganglionopathy (SFG). BACKGROUND: The syndrome of generalised SFG with early involvement of the face, trunk or proximal limbs is not well recognised and contrasts with the burning feet syndrome of small fibre neuropathy (SFN) and classical large fibre features of sensory ganglionopathy. METHODS: Retrospective case review including skin biopsies from four neuromuscular centres. Patients with pre-existing diseases associated with ganglionopathies were excluded. RESULTS: 12 men and 11 women, with an average age of 50 years, were studied. Neuropathic pain developed over days in eight and over months in the other patients. The face (n = 12), scalp (n = 10), tongue (n = 6), trunk (n = 15) and acral extremities (n = 21) were involved. Symptoms began in the hands or face before the legs in 10. The pain was characterised as burning (n = 22), prickling (n = 13), shooting (n = 13) or allodynic (n = 11). There was loss of pinprick sensation in affected regions in 19, with minimal or no loss of large fibre sensibility. Laboratory findings included abnormal glucose metabolism in six patients, Sjögren syndrome in three and monoclonal gammopathy, sprue and hepatitis C infection in one each, with the remainder idiopathic. Sensory nerve action potentials were normal in 12 and were reduced in the hands but normal in the legs in six. Skin biopsy in 14 of 17 showed reduced nerve fibre density in the thigh equal to or more prominent than in the calf. Two of seven patients improved with immune therapies, 13 symptomatically with analgesic medications and the remainder had little improvement. Ten considered the pain disabling at the last follow-up (mean 2 years). CONCLUSION: The pattern of symmetric, non-length dependent neuropathic pain with face and trunk involvement suggests a selective disorder of the dorsal ganglia cells subserving small nerve fibres. It can be distinguished from distal SFN. A potential metabolic or immune process was detected in half of the cases and the disorder was often refractory to treatment.

from -
http://www.ncbi.nlm.nih.gov/pubmed/17911181

Last edited by Jo*mar; 10-26-2009 at 10:48 AM. Reason: added link
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Old 10-26-2009, 03:36 PM   #9
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Sprue is celiac, and/or gluten intolerance.

Sjorgrens is an autoimmune disease more common in women, but may rarely occur in males. It can be tested for, but there are seronegative people out there with it.

21 patients is not a very large cohort.

Notice the mean age was 50...most of the diseases listed occur in that age group. PNs typically start in middle age.

Be careful reading online studies, if you do not have the background to interpret them.

Diabetics, or those poisoned by toxins may show PN signs earlier. You can get PN from food poisoning. Toxic well water.
Inhalants like paint strippers, or pesticides in the garden or on the farm.

You can receive contaminated recreational drugs, including MJ. (pesticides)

In fact there are so many causes, some doctors don't even look for them. You can have thyroid problems. You can have drug reactions...statins, fluroquinolone antibiotics, etc.

In fact now that this is vaccine season, you can get PN from vaccines.
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Old 10-26-2009, 06:31 PM   #10
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Quote:
Originally Posted by mrsD View Post
Sprue is celiac, and/or gluten intolerance.

Sjorgrens is an autoimmune disease more common in women, but may rarely occur in males. It can be tested for, but there are seronegative people out there with it.

21 patients is not a very large cohort.

Notice the mean age was 50...most of the diseases listed occur in that age group. PNs typically start in middle age.

Be careful reading online studies, if you do not have the background to interpret them.

Diabetics, or those poisoned by toxins may show PN signs earlier. You can get PN from food poisoning. Toxic well water.
Inhalants like paint strippers, or pesticides in the garden or on the farm.

You can receive contaminated recreational drugs, including MJ. (pesticides)

In fact there are so many causes, some doctors don't even look for them. You can have thyroid problems. You can have drug reactions...statins, fluroquinolone antibiotics, etc.

In fact now that this is vaccine season, you can get PN from vaccines.
I'm just really concerned that my symptoms have come on so quickly, with the burning now in the last couple of days more or less becoming constant. If this is not a 'ganglionopathy' can a 'Neuropathy' perform in this way? Acute onset burning both distal and proximal? I don't like self diagnosis, but the 'ganglionopathy' study seems to fit my symptoms almost perfectly.
And it is particularly scary that it was noted that "the disorder was often refractory to treatment"
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