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Magnate
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Join Date: May 2007
Posts: 2,049
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Magnate
Join Date: May 2007
Posts: 2,049
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I am a former Lyme case, physician diagnosed at the time, and with an EM rash as well. It has been 14 years, and I have read that Lyme is associated with PN, but that doesn't help you much unless you have an active case of Lyme, as it is simply dubbed a 'post Lyme'. A PCR for the Lyme organism from spinal fluid, is often used to rule out current infection. A positive blood titer does not mean you have current infection, only that you produced antibodies to the organism at some point in your life. What is a current infection with Lyme, and how to diagnose it remains very controversial.
I would assume he is having a biopsy for Amyloidosis, as he is young for fatty liver.
Small fiber neuropathy is best diagnosed by epidermal nerve fiber density biospy, which involves taking punch biopsies of skin rather than sural nerve, unless for some reason, the doc really wants to see that nerve. Docs are of the growing opinion that if they don't need to take Sural Nerve they don't, because it can cause some permanent effects. That said, your doc may need the Sural Nerve for some reason...but I would research that first.
Epidermal Skin Biopsy for Never Fiber Density can often be the only positive finding, when EMGs and Nerve Conductions Studies are normal. It sounds like your husband already has some abnormal tests.
You can have a heck of a bad case of Small Fiber Neuropathy and be normal on a lot of those more routine tests, as in my case.
I suggest going to a Tertiary Medical Center (often associated with a Medical School or Research Facility), with a good Neuro Dept. I muddled around with a local, but large clinic for 10 years when I should have gotten myself to a better medical institution, and I am worse off because of it. There is a lot I would have, and would not have done had I known I had Neuropathy.
I can't tell you how many carpal tunnel tests came back inconclusive yet my hands were numb or tingling or in terrible pain for a decade....'borderline carpal tunnel'..."Here have another wrist splint." approach.
Check out his medications online for neuropathy as a side effect.
Glenntaj has a ton of good info. Oh, and on the paraneoplastic syndromes, small cell lung cancer has the highest correlation to paraneoplastic PN coming on as the presenting symptom, but several other cancers can present with PN. It could also be a purely neurological phenomenon and have nothing to do with cancers. There are many, many reasons for PN, and several types of PN.
And lastly, a good quarter of PN is Idiopathic...which means a cause is never found; diabetes, thyroid, autoimmune disease and a huge number of diseases have PN as a symptom, so don't panic. Toxicities are a possibility as well. It is hard when you get the news and we all jump to the worst possibilities. Diagnosis will likely be a process that takes time. It is hard, I know, and my telling you to relax won't help, but keep in mind, it isn't always a worst case scenario. It does feel that way, tho. Keep the faith.
Feel free to PM me.
Last edited by cyclelops; 09-19-2007 at 05:02 PM.
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