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Diagnosis of neuropathy--the (often) long search for a cause

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Unread 05-07-2010, 06:31 AM   #1
glenntaj
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Default Diagnosis of neuropathy--the (often) long search for a cause

Neuropathy, whether stemming from disruption of one or more peripheral nerves (actual "peripheral" neuropathy) or from disruption of nerves in the brain or spinal cord (which can happen through conditions like multiple sclerosis or mechanical compression), is a very hard conditini to pin down, there are over two hundred KNOWN causes of nerve damage--not even getting into those medical science has not yet identified. Some of these are secondary to other well-known condtiions, such as diabetes, thyroid dysfunction, or autoimmunities; some of these are primary conditionios of damaged nerve. In any case, since neuropathic symptoms can be produced anywhere in the body by problems of the brain and spinal cord, problems of the peripheral nerves, or both, the diagnostic process can be long, costly, and very often fruitless--at least a quarter of all people with nerve dysfunction wind up being labelled "idiopathic".

That being said, there are diagnostic protocols out there that should be followed. These can get lengthy and expensiive in many cases, and not all insurances cover all tests; one often has to decide just how far one wants to go in testing if one does not discover the cause of one's symptoms quickly.

Some sites that help provide source material for people to talk about with their physicians:


http://neuromuscular.wustl.edu/naltbrain.html

This is the diagnostics entry point for the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy (and other neuromuscular conditions). There are parts of each sub-section that are titled "Laboratory", indicating what tests might reveal that particular condition, as well as listings of signs/symptoms that might point to that particular diagnosis.

http://www.aafp.org/afp/980215ap/poncelet.html

The famous Poncelet protocols. The paper is titled "An Algorithm for the Evaluation of Peripheral Neuropathy". Outside of neurology textbooks, this article has become the "gold-standard" guidleine for many physicians and neuros for investigating the causes of potential neuropathies. The flow charts are particularly instructive (and good to show ingorant physicians).

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

One of the best articles I know written about small-fiber neuropathies, which can be difficult to diagnose, as "standard" tests for neuropathy often come up "normal" and fail to reveal them (and meanwhile patients suffer). The reference list is excellent--it includes many of the seminal papers on skin biopsy, autonomic testing, and small-fiber vasculitis and other causes of small-fiber dysfunction (these can themselves be investigated if one wants).

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

A small but dense clinical application paper about laboratory tests to investigate causes of peripheral neuropathy. Dr. Latov heads the Cornell Weill Center for Peripheral Neuropathy in New York City, and he and his staff may be the world's leading experts on immune-mediated neuropathies (not that they're slouches in other realms, either). (All docs there are both researchers and clinicians--and, I can tell you from personal experience, and informed patient can have great discussions with them.)

http://www.neuropathy.org/site/DocSe....pdf?docID=944

Another Latov paper, this one from the neuropathy.org website (the site of the Neuropathy Association), that specifically discussed the diagnosis of immune-mediated neuropathies, a category that most non-specialist physicians are not well-versed in.

http://www.dcmsonline.org/jax-medici...uropathies.htm

Another good paper--this one form Dr. Alan Berger and his colleagues at Jacksonville Shands. It provides a good overview of diagnosis and treatment options for various kinds of neuropathies, and suggests a particular categorizing method to understand them.

And, of course:

www.lizajane.org

This is a wonderful spreadsheet series that was put together by our very own LizaJane, with input from a number of other people who frequent Neurotalk, and designed to be as comprehensive a listing of possible tests for neurological conditionos, both central and peripheral, as our minds could collectively come up with. Broken down into symptomological sections, and with space to track test results over time (to look for patterns), it's wonderful for suggesting avenues to physicians and for noticing changes that might provide diagnostic clues.

Last edited by glenntaj; 05-07-2010 at 12:56 PM.
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Unread 05-15-2010, 06:46 AM   #2
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Default And here's a really nice organizing chart--

--that cycelops found on the Washington University at St Louis Neuromuscular Disorders site:

http://neuromuscular.wustl.edu/over/...alwebn2ie2.pdf

Definitely suggests various testing options as it goes.
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Unread 05-24-2010, 11:47 AM   #3
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Shocked Another list:

This is another listing I found today, looking for the topic:

Drugs that cause PN.
This list is for all causes, and it is really something to see:

http://www.wrongdiagnosis.com/p/peri...thy/causes.htm

I will be starting a new thread on just the "drugs" soon.
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Unread 03-13-2012, 08:26 PM   #4
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Quote:
Originally Posted by mrsD View Post
This is another listing I found today, looking for the topic:

Drugs that cause PN.
This list is for all causes, and it is really something to see:

http://www.wrongdiagnosis.com/p/peri...thy/causes.htm

I will be starting a new thread on just the "drugs" soon.
Dear Mrs D - and hopefully Glenntaj will read this too...

I had the preliminary visit with doctor who will do the skin biopsy to me (he is the co-author of a paper which glenntaj posted in one of his posts - from Shands Jacksonville).

I will have my skin biopsy on march 26. He told me that I will have to take antibiotics after. After reading your thread on antibiotics causing neuropathy I am concerned taking any antibiotics.
In your opinion and glenntaj's too, is it necessary to take the antibiotics or can I forego or are there antibiotics that are "safe" to take without affecting the nerves?

I appreciate your feedback.

Btw, the neuro asked me to take glucose tolerance test. I don't if this will help, I have never had problems with my sugar. Will update you.

Thanks again.
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Unread 03-13-2012, 10:11 PM   #5
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Default Antibiotics

Quote:
Originally Posted by mrsD View Post
This is another listing I found today, looking for the topic:

Drugs that cause PN.
This list is for all causes, and it is really something to see:

http://www.wrongdiagnosis.com/p/peri...thy/causes.htm

I will be starting a new thread on just the "drugs" soon.

are one of the causes, Mrs. D., you have stated in the past. I am having a procedure tomorrow at 12:30p.m. and will be given antibiotics afterwards. Unfortunately, after Cystocele surgery about 3 1/2 years ago, i was given a script for Levaquin. I understand this one of the culprits. I will check in the a.m. for other antibiotics to be on guard against since I will be getting a script tomorrow.

Thanks,
(Ger)
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Unread 03-14-2012, 05:56 AM   #6
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Usually for skin/surgical procedures they give Cephalexin (Keflex) or another newer version of it. Or Augmentin.
These don't show up on lists as neurotoxic. However...the penicillins used LONG term like for Lyme, may have consequences long term on mitochondria. Short term use however, should be ok.

I'd clean those areas well for several days, with rubbing alcohol as well, to prevent any staph infections.

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Originally Posted by Idiopathic PN View Post
Dear Mrs D - and hopefully Glenntaj will read this too...

I had the preliminary visit with doctor who will do the skin biopsy to me (he is the co-author of a paper which glenntaj posted in one of his posts - from Shands Jacksonville).

I will have my skin biopsy on march 26. He told me that I will have to take antibiotics after. After reading your thread on antibiotics causing neuropathy I am concerned taking any antibiotics.
In your opinion and glenntaj's too, is it necessary to take the antibiotics or can I forego or are there antibiotics that are "safe" to take without affecting the nerves?

I appreciate your feedback.

Btw, the neuro asked me to take glucose tolerance test. I don't if this will help, I have never had problems with my sugar. Will update you.

Thanks again.
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Unread 03-14-2012, 06:57 AM   #7
glenntaj
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Default It is interesting--

--that they are having you take antibiotics with the skin biopsy; do they sense you are prone to infection for some reason?

With all the skin biopsies I've had, never were oral antibiotics involved; they simply gave me topicals to apply to the area for a few days after the little bandages came off. The skin samples taken are so small and shallow that there is little chance of infection, I think, in non-immunocompromised individuals.
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Unread 03-14-2012, 07:05 AM   #8
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I think it is the fear of MRSA and staph that seem to
infiltrate clinics and hospitals. Even the staff who do the procedures may be carriers.

I think cleaning the skin well, before the procedure is important.
This is one concept that plastic surgeons prep carefully.
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Unread 03-14-2012, 12:40 PM   #9
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Default Glenntaj

Quote:
Originally Posted by glenntaj View Post
--that they are having you take antibiotics with the skin biopsy; do they sense you are prone to infection for some reason?

With all the skin biopsies I've had, never were oral antibiotics involved; they simply gave me topicals to apply to the area for a few days after the little bandages came off. The skin samples taken are so small and shallow that there is little chance of infection, I think, in non-immunocompromised individuals.
While reading some posts on skin biopsy, my understanding was : with skin biopsy, there might be chances of detecting cause of neuropathy that could not be detected in the bloodworks. This was told to me also by my earlier neurologist. Yesterday, during my initial visit with the neuro who will do the biopsy, he mentioned that the objective of the biopsy is to determine the presence of Small Fiber Nerve Neuropathy. After leaving the clinic, I remembered what my previous neurologist said about the possibility of finding a cause of neuropathy in the skin biopsy. I called the neurologist today and clarified my confusion. He confirmed that the only purpose of the skin biopsy is to determine whether I have a Small Fiber Nerve Neuropathy or not. He even added that he disagrees with what my previous neurologist said. He told me that it will still benefit the patient to take the skin biopsy for official diagnosis and what to do next.

I am confused with the contradicting statements. Though, I am being realistic with my expectations on the result of the skin biopsy, but I am still holding on to a thread of hope that something is causing this neuropathy.

Having had several skin biopsies yourself, I am hoping that you could enlighten me.

Thank you so much.

Last edited by Idiopathic PN; 03-14-2012 at 12:41 PM. Reason: spelling
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Unread 03-14-2012, 12:54 PM   #10
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Quote:
Originally Posted by mrsD View Post
Usually for skin/surgical procedures they give Cephalexin (Keflex) or another newer version of it. Or Augmentin.
These don't show up on lists as neurotoxic. However...the penicillins used LONG term like for Lyme, may have consequences long term on mitochondria. Short term use however, should be ok.

I'd clean those areas well for several days, with rubbing alcohol as well, to prevent any staph infections.
I will take note of the name of the antibiotic you mentioned.

I will clean the areas very carefully after the procedure....what about cleaning it with hydrogen peroxide?

Oh, I am so glad that you are not taking either Gabapentin or Lyrica. Even how seemingly confident the doctors say about the safety of these medicines, but in the long term use, it will have side effects on the total well-being....that is what I am worried about. But, right now Mrs. D, it will be totally unbearable if I dont take Gabapentin. I hope the supplements will do me good just as they do good to you and to others. I am sad that I could not take the R-Lipoic at this time due to my abnormal thyroid function. I have been now referred by PCP to an endocrinologist to manage my thyroid.

Thank you so much.....
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