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  • Understand the cause of Neuropathy

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    Old 08-11-2006, 09:08 AM   #1
    hunter1042
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    Post Understand the cause of Neuropathy


    I have had neuropathy for almost two years now and am taking neurotin 3600mg, tramadol 800mg (Lyrica does not work for me) and provegil to handle the fatigue which most of you I am sure are feeling. I have a medical background (toxicologist) not that does mean anything. I want to let everyone know that neuropathy is not a disease but a symptom of a disease.
    From what I am reading on this website their GP or a neurologist is calling what they have as the end of the search. To make a long story short, I am now on to the fourth subspecialist in neurology, autonomic neurologist. My case is somewhat unusual but everyone should fight to find the cause. I have been tested for over twenty five diseases that can cause this symptom of neuropathy. I have had hundreds of different blood tests, bone marrow and intestional biopsies etc, each ruling out diseases such as multimylomia, amyloidosis, cancers which can cause this symptom. We are narrowing it down. Some diseases are treatable and others are not. How far it progresses is determined by the disease and not the symptom of neuropathy. Some are even fatal. I don't want to scare anyone but please be your own advocate in this problem and demand that the cause is found which is the only way to know how to handle this issue.

     
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    Old 08-13-2006, 03:11 PM   #2
    charlietoo
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    Re: Understand the cause of Neuropathy


    Hi - I've read several of your posts - have severe neruopathy myself and have had extensive testing... you mention that your symtoms are very unusual - may I ask what they are?

     
    Old 08-14-2006, 12:43 AM   #3
    nacho
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    Re: Understand the cause of Neuropathy

    I wanted to tell everyone that has an Idiopathic Peripheral Neuropathy (don't know the cause) that there may be a connection between the P.N. and the use of a certain class of antibiotic. These antibiotics are a class called Fluoroquinolons. There are about 5-6 of them. They all end with - floxacin. My particular one was ciprofloxacin that aggravated my P.N. that was getting better. ALL of these fluoroquinolones have been now linked to causing P.N. and tendon ruptures and eye problems and a lot of other health problems. Just google in Fluoroquinolones and neuropathy or side effects, and it's all there. Some people are affected worse than others, and some have no effects. The effects can be soon after taking the antibiotic, or months later problems can come up, long after you have forgotten all about taking the antibiotic. There are forums filled with victims of these antibiotics,with all sorts of heath problems. A warning was released in the fall of 2004, but very few Drs. are aware of it.

     
    Old 08-14-2006, 10:46 AM   #4
    don'tlikecold
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    Re: Understand the cause of Neuropathy

    Hi,

    I think your concern is valid to a point. Most of us have undergone extensive testing without any real conclusions as to the cause. For myself, I have a tentative dx of Fibromyalgia. Drs hesitate to give a dx of Fibro as there isn't a test for it but the dx is based on sore pressure points along with other symptoms. In any case, my Fibro sx are well under control with Lyrica.

    The only other thing that can even be a factor is that I have had CMV twice and some studies show that this could be a viral connection. I have never taken the ATBs you mentioned.

    Speaking for myself, once the major diseases were ruled out, I have lost much of my interest in finding the cause. My main priority is to control the neuropathy and to slow or stop the progression. With this goal in mind, I spend more time researching ways to help my body heal than I do in finding the cause.

    Many here have limited or no insurance due to the inability to work. It would be a hardship for them to continue test after obscure test. The fact is, many people undergo an enormous amount of tests with no cause found.

    You may not see many people post about the tests they have undergone because the main support issues are pain and medications. But thank you for your information. It may help someone.

    Susan

     
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