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Old 12-13-2011, 10:03 PM #1
better12 better12 is offline
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Join Date: Dec 2011
Posts: 18
10 yr Member
better12 better12 is offline
Junior Member
 
Join Date: Dec 2011
Posts: 18
10 yr Member
Default Next Tests? Any Advice?

Hello:

New to the forum, but NOT new to neuropathic type pain!

My short background: Male, 42, developed burning/tingling sensation in left sole in early 2005 (when 36)...by mid 2005 in right sole and occassionally outer front calves. Was able to ignore until late 2006 where I had the same sensations in palms and outer regions of both arms. By late 2008 same sensations in upper back and by mid-2009 on the rear of both quadriceps.

At this point I sought medical help/tests/pain relief.

Since then, most tests normal. Basically normal MRIs from Brain to Lumbar. Negative repeatedly for diabetes, hiv, normal b12, normal ANA, sed rate and thyroid and in 2010 a totally negative skin-punch biopsy for small fiber neuropathy - this seems to be very telling, especially since I was repeatedly told I have 'peripheral neuropathy' and this lab claims an - 88% + accuracy rating.

Only tests to NOT be normal are: low D3 and very elevated EBV (chronic infection) in 2010 and equivocal Lyme test results in 2008.

Much of the burning sensations (as outlined above) got MUCH more widespread AFTER I stopped about 2 months of antibiotic for Lyme treatment in 2008 - NO I did NOT take Flagyl as I know it can cause neuropathy.

My pain is strictly neuropathic (burning/buzzing/tingling/tingling). Seems to come on upon sustained contact. NOT instant contact like in RSD. I have NO muscle or joint pain, no swelling. Just a hypersensitivity to 'prolonged' contact or pressure which present anywhere from a few minutes or less of contact.

Heat makes the burning skin worse, cool seems to help a little, but not too cold, which in turn feels like a freezer burn.

I've seen several neurologists - they have no idea? Just want to give me gabapentin, which I've taken for almost 4 years with very little relief at 2400 MG/day. I tried increasing, no greater benefit.

My question? What would be prudent tests that may have been overlooked?

I'm curious IF hormones could play into any of this? I DO have some symptoms of hypothyroid, despite a normal result back in 2009.

Any vitamins testing to consider? I was very low in D3 (21 from a range of 30-90). Would it make sense to test for B6? Magnesium?

I ask about magnesium for I will twitch violently whenever I've attempted to take a magnesium supplement - even well BEFORE I developed neuropathic pain.

Like others here, these symptoms are very difficult to live with. The gabapentin has not helped (actually made things worse in that I've slowly gained weight, despite efforts to exercise etc).

I believe there's a cause for everything, and I have to really wonder, do I really have 'idiopathic pn' when compared to the totally normal skin punch?

If it's not PN? And it's not MS or another CNS induced pain? Could it be Vitamins, thyroid, male hormones etc etc?

Just looking for a direction to go at this point of the search?

A kind thanks in advance,

JB
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