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Old 10-05-2007, 05:06 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default Yes

All of the tests for sensory neuropathy should be done, regardless of what her skin biopsy shows.

It used to be that doctors didn't have the skin biopsy test (It's recent, within the last few years), and the diagnosis of small fiber neuropathy was based on the patients symptoms and history. Now that the test is available, it's terrific, because it puts a stamp of approval on the "clinical" diagnosis. But it's a random biopsy, and might not pick up the damage. In that way, it's a two-edged sword--it's not likely to get a false-positive; but it's quite likely to get a false-negative. It's not really good for "screening".

So, whether it's positive or negative, one has to look for the CAUSE of the nerve damage. Because you want to be able to know what to expect, and how you can stop the process, if you can.

The blood tests are no big deal, really. They can be done at one visit to the lab or doctor. Athena runs them all. When I completed my own panel, I printed out a requisition from Athena's website and checked off everything I wanted and brought it to the doctor! Yes, that's a bit ballsy, but everyone's experience here, pretty much, is that the doctors appreciate having their work made easier, and they all love the spreadsheets.

I think a lot of people here have noted that symptoms of neuropathy get worse when they're ill, like with a sinus infection. Being the queen of sinus infections, I can unfortunately attest to this; though, on the bright side, the increase is always temporary.

Pregnancy, huh? How was her thyroid? Women can become hypothyroid durin pregnancy and that is associatd with neuropathy. TSH, Free T3, Free T4. Were those done? Gluten? has she had the antibody tests or HLA tests? B12?

If I were you I'd download the spreadsheets on neuropathy and just remove from your own list the tests for motor neuropathy, and bring it to your doc. I'd also take the Athena slips:

http://www.athenadiagnostics.com/req...sReq_blank.pdf

If this link doesn't work for you, create an accountt and you'll get be able to get there.

You want tests:275, 263, 369,234, 392,243, 235.

There may be some overlap between these panels; I haven't made a list that I could read as writing, but you'll get the idea.

The rheumatological tests would be from a standard lab.

If all is negative, I think a consensus is emerging for the spinal tap, because that's the only way to diagnose CIDP, and it's become clear in the past few years that CIDP can be sensory.

Glenn----time for you to chime in and see what you think---Does this sound right to you?

Also, I want to emphasize the importance of the lizajane sheets and keeping them up-to-date. Doctors cannot easily access test results done by other doctors, and along the route from first symptoms to diagnosis and aging, it's becomee more and mor important for patients to keep their own charts. I have a looseleaf. YOu don't have to do it online; you can fill in the charts in pencil or pen, if that's easier. But here's what mine looks like after a decade:

http://www.lizajane.org/PN/Users/liz...e%209,2007.xls

It's about 8 pages now, but all docs have appreciated it. And it's online, so if you're in hospital or in a doctor's office without it, it can be accessed on the spot.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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