NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   would welcome feedback + PN from chemical exposure ? (https://www.neurotalk.org/peripheral-neuropathy/223911-welcome-feedback-pn-chemical-exposure.html)

jshire 08-01-2015 03:47 AM

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

Healthgirl 08-01-2015 07:26 AM

Quote:

Originally Posted by jshire (Post 1159227)
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?

jshire 08-01-2015 08:06 AM

Quote:

Originally Posted by Healthgirl (Post 1159237)
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

mrsD 08-01-2015 08:09 AM

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.

jshire 08-01-2015 08:19 AM

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 ?

jshire 08-01-2015 08:21 AM

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.

mrsD 08-01-2015 08:24 AM

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.

jshire 08-01-2015 08:28 AM

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.

madisongrrl 08-01-2015 11:10 AM

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.

jshire 08-01-2015 11:23 AM

Quote:

Originally Posted by madisongrrl (Post 1159274)
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 !


All times are GMT -5. The time now is 05:26 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.