Study about causes of idiopathic neuropathy
 

Isn't this basically what the statistics have shown over recent years? It seems like if you don't have some form of a glucose issue you may never know what caused it.

When I saw neurologists at the University of Wisconsin teaching hospital, their position on this topic is that 50% of SFN is due to glucose issues and the other 50% is idiopathic.

That is what my neurologist told me as well. I have basically been ruled out of every symptom on the list in that study. This is why i keep going back to 6 years on a statin and acid reducer. One of those, or the combination had to have had something to do with mine. There have been specific studies linking statins to neuropathy, oddly enough they are not something listed in that study. Lots of medicines are proven to cause neuropathy but we wouldn't want to make the big pharmaceutical companies look bad now would we?

One piece of this problem is that there are not a lot of connections made between toxins/medications and neuropathy in the medical literature. I was personally concerned that my environmental exposure to chemicals could have caused my symptoms so I scoured PubMed and it was pretty thin on information. I think it is just hard to prove cause and effect - much like it was hard for researchers to prove that smoking causes cancer; they only had epidemiological cohort studies to look at.

Another piece of this, is that Phase III trials generally only last 2 years and then the company files a NDA to get the drug approved. Are doctors only seeing patients acquire neuropathies after 5 or more years of statin use? This would not have been seen in the clinical trials. And if doctors are seeing idiopathic neuropathies with their statin patients, why aren't these connections being identified? And if doctors are making these connections, are they reporting them to the adverse event hotline?

Patrick, if you have ruled everything else out and you think that your statin caused your neuropathy, you should report it.

https://www.accessdata.fda.gov/scrip...reporting.home

Click the "consumer/patient" button on the right.

Thanks madisongirl for the useful link.

It was interesting to note that there were nearly twice as many pre-diabetic patients as there were diabetic that had been classed as idiopathic. This coincides with what some on NT have found.

One of the reasons that the causes of medication/chemical induced PN are not showing up in studies may be that the studies are taking so long to complete and post results.
Came across this article about the high number of institutes that are failing regularly to make public results - it could of course also be that the drug companies are trying to keep a lid on harmful side effects for as long as possible. :rolleyes:

http://www.statnews.com/2015/12/13/c...investigation/

I think you are definitely on to something.
 

I suspect toxic neuropathy is more common than is generally believed; it may be due to environmental exposure in some cases (and the Washington University Neuromuscular website certainly has a massive database of chemicals known to be neurotoxic) but I believe far more of it is iatrogenic--caused by medical interventions, particularly pharmaceutical ones.

And yes, unfortunately in a lot of these cases the neurotoxicity of the drugs does not show up quickly, but only with steady dosing over longer periods, so it doesn't usually show up as a prominent side-effect in the shorter clinical trials. With drugs designed to be taken for lifetime chronic conditions, it may not be noticeable for years or even decades. Drugs like the heavy metal anti-cancer meds (i.e., cisplatin) are notoriously neurotoxic because their effects show up rather quickly, but as has been mentioned, we are seeing neurotoxic effects with long-term taking of statins. These effects would have been hard to pick up in the original trials. And I suspect that we may one day find other neurotoxicities from other long term drugs or long-term small quantity chemical exposures (contrast the sudden effects of Agent Orange with the slow effects of phthalates).

I was angry
 

that the Neuropathy Foundation website didn't say jack about statins so I left a message and several days later got a returned call. I was informed that the statin issue is well covered but the word statin is NOT used. I haven't pulled up the document yet but I was told that the statin issue can be found under heart issues and associated medications. I could not get an admission that this was an attempt to bury the info to satisfy Big Pharma. I may dig deeper after the holidays. Good Luck, Ken in Texas P.S. www. foundationforpn.org

The best know cause of PN and AN is diabetic neuropathy, and as well injuries to the spine and brain. I think the idiopathic could be related to autoimmune, as many have posted here, thier PN is often accompanied by an autoimmune disease, but nobody knows the mechanisms behind it. i READ somewhere, that idiopathic could be related to glucose intolerance or pre-diabetes, Most people would suspect neuropathy and full-blown diabetes, not the pre-cursor diseases though.

Ya know, way back you insisted upon *, telling me diabetes gave me small fiber neuropathy. Without really knowing my situation. I don't even have pre diabetes. I have had endocrine and heart levels extensively tested for 6 years before I even developed my SFN. Never an issue with glucose.

With all due respect i wish you would do a little more research on this without throwing out such matter of fact claims. Studies show that diabetes related issues are a large component - but around half of all cases. The other half is a smorgasbord of illnesses. So, to make out like "eh, it's probably something to do with blood sugar". Is irresponsible. Just looking at this board will show you that the causes are a wide spectrum.Not even remotely as simple as you make it out to be.

Yeah, I was idiopathic and don't have diabetes either.

Given that there are more than 100 different types of Neuropathy and at least as many causes it's not surprising that the term 'ideopathic' is used to define those neuropathies to which no specific cause can be attributed.

Sometimes it may be a case of too many co-existing conditions to pinpoint the specific cause, or maybe an undetected underlying condition. Depending on where you live, definitive diagnosis may be beyond the experience of the physicians. Equally, rationed resources under Public Health Systems, may mean that extensive testing is not offered and the ideopathic label is given as an easy explanation. Or it could just be plain laziness or incompetence of the doctor to seek answers.

Being given the ideopathic label is not the end of the line as many here have found out. You know your body and circumstances better than any one. If you take the ideopathic diagnosis as a starting point and do your own 'detective' work; eliminate any known possible causes, become informed, seek out medical professionals that are willing to work with you, then you may be able to manage this condition in the best way that works for you.

As far as I understand, the statistics in this research is based on 373 people who were referred to a specific peripheral neuropathy center with a previous diagnosis of idiopathic neuropathy. So it doesn’t necessarily represents the ratios in the general neuropathy patients population.

Maybe many people with diabetic neuropathy weren’t diagnosed as idiopathic in the first place, so they weren't reffered to this clinic or were left out of this research. Thats why only 25% there were found to haveimpaired glucose metabolism, and there were much mor eprediabetic then diabetic.