would welcome feedback + PN from chemical exposure ?
 

Hi, here's what's been happening for me:

I've been going to my gp for at least 2 years with symptoms. Mine are fatigue & vague sensations in the feet / lower legs. They're not painful - more 'odd'. I'm not sure i'd even use the term tingling - its more like a buzz that some days is worse than others. If I manage to walk a fair bit then they tend to buzz even more & the sensation goes further up my legs (always below the knee though). So, I told my doctor I work with certain chemicals but after repeat visit trying to get something done he arranged blood tests & then liver / kidney scans - testing for diabetes etc. All that was found was I needed B12 injections & more recently he advised that I need Vitamin D supplements. After doing a lot of research on my own re: the various chemicals & links to PN I went back to him & mentioned it. He said it might be that (why didn't he mention this himself earlier ! I could have stopped using the chemicals sooner). It then took some effort to get him to refer me to a neurologist & i'm now waiting to see if one will see me. I'm not sure what i'm asking here - I think i'm simply feeling a bit unsure of things & what I can expect now. Perhaps i'm over worrying but I still think about whether I might have or get diabetes. I know advice says exercise etc. but whatever it is I have means I have no energy & currently spend a lot of time resting. My doc has also prescribed anti-dp's but i'm not sure I should take them as i've read that some folks think it best to wait until one sees a neurologist + the ones i've been prescribed are known to increase weight & if anything I really need to lose some weight. I'm not massively over weight but i'm not at my ideal weight for my height / age etc.

I'm 50 years old & in the UK by the way.

I guess i'm 'at the start' of all this & lots of you on here have been through all this already, but it seems there's such a lot of hassle even getting the tests let alone a diagnosis & as for any treatment !

So, i'd welcome any feedback on what i've said above & if there are any folks in here who've also had PN because of chemical exposure i'd appreciate hearing about that. Also anyone in the UK who has experience of the NHS way of dealing with all this.

ta,


27 mins · E

Can you tell us what the chemicals are?

indeed:

Naptha
Hexane
Toluene
Ethylbenzene

most of which are known for causing all kinds of things including PN

Welcome to NeuroTalk:

I'd press your doctor to do some immune factor tests.
Solvents can affect the bone marrow leading to cancers arising there. Benzene is a known carcinogen.

You can Google those solvents to find the specific toxicity of each one.

thanks - yes, I know about Benzene. To be honest its been hard work getting my doctor to give me any tests & he (& other docs in the same practice) have basically said there isn't much else they can do as I don't have the right indicators for other tests. As I said I had to push hard to get them to refer me to a neurologist. Any tips / advice on immune factor tests ? Also, am I right to assume that if I do get to see a neurologist they'll want to explore things like that anyway ?

ps. I have been to see a rheumatologist - he did some blood tests. In fact I have an appointment with him this coming week. Should I ask about immune factor tests with him ? thanks.

IgG and IgM are the typical ones used.

http://www.questdiagnostics.com/test...ripheralNeurop

This link is a list of tests used by Dr. Latov in NYC who is an expert on PN. The immune factors and rheumatic testing is listed on this list.

thanks - however, i'm in the UK & its a very different system here. You have to push hard to even get a basic blood test sometimes & getting all those other tests would mean having to have certain indicators. Without those doctors can't refer you for the tests. I've had tests for kidney, liver, diabetes, hyperthyroid, limes disease, vitamin B & D etc.

Hi jshire,

I was a chemist for over 13 years. I basically had a semi-acute presentation of SFN within 11 months of receiving a dangerous chemical burn by a very power solvent that is a neurotoxin (trifluroacetic acid). I was sick and in whole body pain for 2 weeks after the exposure. I'm lucky as I did not require a skin graft like some. I also worked with many other chemicals, but I was extremely safe 99.9% of the time. My neuropathy came on after I left that environment, so I don't think it was the cause. I do, however, always keep it in the back of my mind because my neuropathy is idiopathic.

In what capacity did you work those chemicals? Did you wear a respirator, gloves, fume hood? Do you still work at this job? Did you have any chemical exposure accidents? Are any of your co-workers having issues?

I've done a lot of research in this area due to my occupational exposure. If chemicals caused your issues, it will be near impossible to prove. Doctors will be dismissive because they are trained to think that chemical exposures will show up centrally on MRIs.

For the chemicals that you listed (I've worked with most of those as well), I think you will find lots of strong evidence in the medical literature about the associations between neuropathy and hexane (hexane has been studied a lot). The evidence is less strong with benzene and toluene.....but that doesn't mean it can't be the cause. You might want to spend some time looking up "toxic neuropathy" & "hexane exposure". You should get plenty of articles to read.

thanks - the frustrating thing is that one does kind of feel like there's no one to talk to (expert wise) that can discuss the situation, especially if the neurologist won't be able or willing to confirm the cause.

I build microphones - its been a kitchen table size business but a couple of years ago I started getting the substance in bigger tins (5 gallons !). I have to confess that because I was only using it for a few minutes at a time, perhaps 3 or 4 times a day, I didn't use a respirator. In fact quite a lot of the time I didn't even have a window open. I've done a lot of research since the I found there might be a link but its still really tough to decipher it all or find someone who can talk me through whether I should stop totally (there isn't a replacement product) or will be ok if I use a respirator & more ventilation etc. It's actually really scary !

Toxins that attack the axons of the neurons, may require healing with special supplements. (to rebuild that myelin sheath)

B12, folate, B6 and omega-3 fatty acids are the basic repair team.
(methylated B12 and folate).

Choline is also needed for cell wall repair.

There are others, but start with these to see if there are improvements. Google "nutrients to help remyelinate axons"

thanks for this. If there's anyone in the UK who knows where to find these kinds of things do let me know. I've looked on Holland & Barrett (a health food chain here in the UK) & can find Omega 3 & Choline (with Inosotil ?) - but if anyone knows of any other places or combinations available over here. ta.

It would be very ideal to stop using these chemicals. But, there is this thing called money and we all need to make some to live. :)

Every chemical comes with something that is called a MSDS sheet. It should be sent with each chemical that you order. You can also find them on the internet. Read these sheets with great care because they will tell you the safety precautions that you must take when working with these chemicals.

You should definitely have 4 pieces of safety equipment when you work with things like hexane and toulene - 1. safety glasses, 2. lab coat, 3. nitrile gloves, 4. respirator and/or fume hood.

If you buy a respirator, you have to make sure you get a proper one given the substances that you work with. It also needs to fit properly. I used a small half mask one with cartridges that filter out both organic solvent vapors and particles.

You should also buy nitrile gloves, not latex. Many solvents penetrate regular latex gloves.

If you are safe and limit your exposure with safety measures, hopefully your neuropathy symptoms improve. :)

thanks. yes indeed - its been a key part of my income.

It never touches my hands so I didn't use gloves & I have been looking at various respirators (3M brand).

I have found the safety sheet for it online & read it + shown it to my doctor. It does indeed say ventilation / respirator etc. It doesn't mention safety googles - is that to do with the fumes getting into ones eyes ?

Safety glasses, lab coat, gloves and respirator are actually listed as minimum for the chemicals you listed. I can tell you without even looking since I'm very familiar with benzene, toulene and hexane. You can find it in Section 8 of the MSDS.

I have seen every accident under the sun. It is very easy to have an accident and splash any of those chemicals on your skin or in your eye. You might want to reconsider at least wearing gloves and using safety glasses. You can get those items at a reasonable price off Amazon.com

thanks - point taken. I have a few orders that are already outstanding to complete & i'll use mask etc for those & then I think i'll wait to see what happens when I see the neurologist. Its quite a step to think of stopping doing the work though i'd rather have my health of course.

iherb.com ships to UK.

Hi jshire,

Throughout the '80s I had my hands soaked in Xylene and Toluene daily at work from open containers - no respirators. My Neurological issues of all sorts started in 1990 after a serious motorbike accident, but now I am not so sure this was the trigger. My brain MRI shows a shotgun pattern of white matter lesions.

I brought the Neurotoxicity angle up - along with many other questions relevant to my multiple Neurological conditions at my first appt with a Neuro for years. Unfortunately, I found this Neuro to be the same as the majority of NHS ones I have seen - a detatched, arrogant idiot who would not answer any questions I put forward. He was unable to read an MRI Report and contradicted the dx of a well-known Consultant who has been in Practice longer than the Neuro had been alive!

I was SO mad, I complained to my GP about the appt and have sworn never to return.

My GP researched and agrees that my Neuropathic issues may have a Neurotoxic origin, in part. I am also going to broach the subject with my PM Consultant (Anaesthetist) this month. Outcome and treatment is the same whatever the cause, but it is nice to be able to hang it onto a particular reason.

I do not wish to sound negative about NHS Neuros, but they seem to be the only Speciality where a dose of humility would not go amiss. I have only ever found one good one, who dxed my Cluster Headaches. I'm sure there are other good ones about, I hope you get to see one of them.

Dave.

thanks Dave. I'm in Yorkshire also - whereabouts are you ? How did you get referred to a PN consultant ? was that via the Neurologist or your regular GP ?

I was never referred to a PN Specialist, I don't even know if they are Retained here. Of course, I am Rural, it may be different in Leeds/Sheffield. I have seen the same group of Neuros for Neuropathy, TN/NFP, Cluster Headaches, Spinal Cord Damage… with much less success (except Cluster treatment) than with my GPs and PM Team.

Each individual Neuro seems to stay in their Post for 6 months - the time between appts - and each one has their own 'pet' medication - after you have told your story all over again and had yet another examination.

Titrating up and down with bad side effects is not worth the trouble twice a year, so I now control (barely) with PM and Meditation.

Dave.