[LizaJane]

For all experts:

I'm having a myelogram on Friday, and when they do that, it's easy to take off some spinal fluid to send for testing. This is one thing that's never been done in my work-up for neuropathy.

I'm going to call my neuro and ask him to ask the radiographer to draw some fluid, but I want to make sure it's sent for EVERYTHING that could be helpful.

Can anyone come up with a pretty complete list, perhaps one that goes beyond what I've posted on lizajane.org?

I looked on labcorp to see what's available and got these:

Myelin basic protein, IgG synthesis rate, IgG Index, protein electrophoresis, cell count, oligoclonal bands. They all seem to be about ruling out multiple sclerosis.

What would make the diagnosis of autoimmunity or CIDP? Or be abnormal in sjogren's?

Glentaj? I have a feeling you know these answers.....anyone else?

[glenntaj]

--as regards protein, and what's on www.lizajane.org, including the infectious testing (VDRL for syphilis, polymerase chain reaction culturing for bacteria/viruses, gram stain for bacteria/yeast) it's a pretty comprehensive list.

Two things that might also be included--the India Ink test for fungal infection, and possibly, within the protein testing, a specific subdivision for cerebrospinal albumin level. This latter is done when overall protein reading come in high to see if this is all due to increased IgG antibodies or whether albumin levels are contributing (though the level of albumin is typically around 1/250th to 1/500th of what it is in serum).

The unfortunate thing about finding high levels of protein, particularly IgG, in CSF is that it's not that specific an indicator. It doesn't always even mean that an immune reaction is ongoing, although that is the presumption. CSF protein is typically elevated in Gullain Barre, CIDP, MS, meningitis, and Cushing's Disease, but may also be elevated in hypothyroid conditions, uremia, people with brain or spinal tumors, even diabetes . . .even the addition of oligoclonal bands, more typical for autoimmune condtions, especially if they are not also present in a serum electrophoresis, doesn't "cinch" those diagnoses.

[dahlek]

as to whether blood, spinal or biopsy work is entailed.

Read and determine?

http://www.thecni.org/reviews/13-2-p11-chang.htm

http://www.pnseuronet.org/

http://accessible.ninds.nih.gov/news...#contentColumn

http://www.aruplab.com:80/guides/ug/tests/0051226.jsp

http://www.athenadiagnostics.com/con...paraneoplastic

Good luck - j

[LizaJane]

Turns out the doctor who was going to do the myelogram tomorrow is out of network, and it would have been a fortune. So I've canceled the test and will reschedule in-network.

My neuro says there's a good chance of false positive elevated protein, and was not in favor of testing. I look at it another way---if the protein is normal, that's a pretty good indicator that the neuropathy is not CIDP or autoimmune.

I'll ask if they break the protein down to make it more likely to identify false positives.

But now, I've ended up with a day off, and NO myelogram. Not a bad thing, I'm thinking....

Thank you Glenntaj and dahlek.

[dahlek]

Think of it this way, if auto-immune, just IMAGINE the possibilities of even more complications than you already have?
Overall, neuropathies are mind-boggling the implications/conditions/diseases ...whatever [depends on who you read or where they come from] never seem to agree on this aspect of it ALL.
I think I understand your disappointment about the test tho...all dressed up and no where to go or the like.
I also appreciate your decision to 'get' as much out of a spinal tap as possible. It's an invasive procedure, less so than surgeries, but still equally or more invasive in terms of dangers is one IS immune-compromised. Ergo the bang for the 'tap. For that I do think you are wise to try and get that 'bang' when you are sort-of being 'bunged'?

If I may, ask a more 'basic' question? Someone has asked me about the specific tests and their test complexity progressions during the diagnosis processes. I re-reviewed the worksheets and see the components of testing=test aspect results, but no simple 'roadmap' of how the test types progress and what they are... I do recall I had had over 90% of the test factors listed on the worksheets, but well, back then [way-back, it seems now?] I had not gotten into the habit of copying the test orders...so I could look up the "what-all it means' after I get results. All I recall is that there were lots of boxes checked w/lots of numbers either before or after them. And yes, I've the results, but just the results...no key identifications as to the actual tests conducted. Even my insurance EOB's are no help...just 'lab work=$$$$$$ and I pay Y amount.. I do know test orders come is sort of 'clusters' testing groups of things specifically for special immune issues, nutrition issues and hormone issues, but when there are 10 to 15 checked of a 'lab sheet', well the mind fogs over and just goes-OK TAKE MY BLOOD etc.. At what point does it get really complicated? Do I want to know? even...
Sooo any simple help here would help others truly. Thanks for any help.

Network vs out of network can and is truly a pain! Good thing one of my docs who's gone 'out of' since I signed on, worked out something with my plan, for me. For that I am one very grateful person, both to the doc and the plan. So many here know all to well, how PLANS at times rule good, bad or indifferent medical care. Sigh. Hoping you have mostly GOOD in your network! These things can get soo terribly sticky and beyond hassles. - j

PS Hope you have some Dove bars handy, sounds like they mite come in handy. I prefer Hersheys Extra Dark...no reason, just like the super dark stuff. Let the endorphins loose.

[LizaJane]

Dahlek, I'm not sure what you are asking here. Can you try to ask me more simply what exactly you are trying to find out? I don't know what you mean by "test factors" or "test complexity progressions".

I listed the tests by type: primarily sensory neuropathy vs primarily motor. Then I listed for genetic, metabolic, etc., causes, but I don't think of it as progressing in complex manner.



<<<If I may, ask a more 'basic' question? Someone has asked me about the specific tests and their test complexity progressions during the diagnosis processes. I re-reviewed the worksheets and see the components of testing=test aspect results, but no simple 'roadmap' of how the test types progress and what they are... I do recall I had had over 90% of the test factors listed on the worksheets, but well, back then [way-back, it seems now?] I had not gotten into the habit of copying the test orders...so I could look up the "what-all it means' after I get results. All I recall is that there were lots of boxes checked w/lots of numbers either before or after them. And yes, I've the results, but just the results...no key identifications as to the actual tests conducted. Even my insurance EOB's are no help...just 'lab work=$$$$$$ and I pay Y amount.. I do know test orders come is sort of 'clusters' testing groups of things specifically for special immune issues, nutrition issues and hormone issues, but when there are 10 to 15 checked of a 'lab sheet', well the mind fogs over and just goes-OK TAKE MY BLOOD etc.. At what point does it get really complicated? Do I want to know? even...
Sooo any simple help here would help others truly. Thanks for any help.>>>