Lumbar puncture- can it be revealing?

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6
Hi folks. My neurologist has offered a lumbar puncture test but doesn't believe anything will be revealed. He's looking only at neurological causes for paresthesia, which he thinks is just a b12 issue. I'm wondering if there are other aspects of the analysis that can be of use in determining or making the case for/supporting a diagnosis of ME/CFS. Thoughts?

Adam
 

Zebra

Senior Member
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Hi, @AdamF

If I could go back in time I would have insisted on a spinal tap during the first few weeks, months, or even first few years of my illness.
In addition to the basic analysis of spinal fluid, the spinal fluid can be examined for numerous pathogens and also autoimmune antibodies.

Best of luck to you!
 
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6
Thanks for your reply! Do you know if I have to ask for specific analyses or will the things you described automatically be addressed? I'm not really sure where to start. It's hard and slow to get specific information and answers from my neurologist. I think I want the test, but only if I know ahead of time what will be assessed and that I have assurance that certain things will be looked at. I doubt I'll get this opportunity again.
 
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21
I would be careful though because a lot of people with ME have underlying connective tissue disorders which can make us more susceptible to CSF leaks after LPs, especially if they’re not done carefully
 
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6
One additional question I have is exactly what tests I should expect to already be included in the lab analysis, and what should I specifically ask to be included?
 

hapl808

Senior Member
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I would be careful though because a lot of people with ME have underlying connective tissue disorders which can make us more susceptible to CSF leaks after LPs, especially if they’re not done carefully

That would be my concern - I've seen a few people who got an LP and ended with leaks, failed blood patches, etc.
 

Blazer95

..and we built castles in the Sky.
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i had one and besides IgM being low as fck it didnt reveal anything. also diagnostic testing is only so good in what extend you can derive a treatment from it.

for example: your Th17 is low as fck -> great you now know to avoid herbals and drugs that reduce th17.

i wouldnt know what a Lumbar puncture being good for asides confirming neuroborreliosis, conforming encephalitis and confirming MS.

in most of these scenarios other tests would have been revealing and you're just getting it confirmed with the LP. its 100% not worth for ME/CFS. sorry.
 

Zebra

Senior Member
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Location
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Thanks for your reply! Do you know if I have to ask for specific analyses or will the things you described automatically be addressed? I'm not really sure where to start. It's hard and slow to get specific information and answers from my neurologist. I think I want the test, but only if I know ahead of time what will be assessed and that I have assurance that certain things will be looked at. I doubt I'll get this opportunity again.

Hi, Adam,
I'm sorry for the delayed response. I didn't realize you had posted a question for me.

I found a nice summary of possible CSF analysis from Mount Sinai, and I've included the link below.

I agree with you that if you were to go through with the lumbar puncture your neurologist (and other providers) should agree to look for all reasonable possibilities for your symptoms.

I don't think I know, or recall, all of your symptoms, but depending on your symptomology, some desired tests might be:

*Viral DNA testing
*Culture for bacteria, fungus, and AFB
*Antibodies for autoimmune encephalitis

When CSF fluid is drawn, some can be put aside for future testing, but I don't know how long it keeps.

I remember in your original introductory post you mentioned that you were a farmer.
Have you ever been to an Infectious Disease Specialist?

I got to see one many, many years ago, and although he was not able to diagnose and treat me for an active infection, he did take the most thorough medical history of any physician I've ever seen, and he made diagnostic suggestions to my other physicians at the time.

He holds a special place in my memory for trying so hard to help me, even in areas outside of his purview. Obviously, all IDS are not equal, but I do think that they are more curious than most other types of physicians.

If you think I can be of more use to you, you can get my attention by including "@Zebra" in your post. All the best!

LINK: https://www.mountsinai.org/health-l...F) analysis is,glucose), and other substances.
 
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