Author Topic: New article about personalized treatment - Anyone had spinal fluid testing?  (Read 1431 times)

SjoGirl

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Hi all,

I found this on the AARDA FB page today:

http://www.hospitalhealthcare.com/editors-pick/expert-view-how-personalised-autoimmunity-2019?fbclid=IwAR3vjkFIIWokqpepUyVfGHfwTvQsgIPcnlqZYAqFyjWvhcq_0OU4ObZvo-8

Have any of you had spinal fluid testing? Other than bone marrow no one has ever checked mine out. I sometimes wonder if I should have gone ahead and had the spinal tap that my neurologist thought he might do early in my illness. I was tired of tests and scared of the tap after having had the bone marrow biopsy. While the biopsy itself was painless the aftermath of the heavy duty drugs they used to numb me was not fun.



Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

irish

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I would think that a person would need to have symptoms that would justify doing a spinal tap. It is invasive and they don't do them without a good reason. Generally the neuro-degenerative diseases like MS, etc. Irish

Carolina

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Hi SjoGirl,

My only lumbar puncture (preferred to 'spinal tap', I guess) was when my first neurologist was trying to find out what was causing my profound peripheral neuropathy.

I had gobs of tests, and nothing was found.  My spinal tap was normal.

I've had every test several times, with no cause ever found.  My immunologist says 'we use the tests we have, not the tests we need'. 

Wishing you success in finding treatment modalities that will improve you quality of life.

Regards, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Joe S.

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I had a mylogram that left me paralyzed from the waste down. I will never let them touch my spine again!
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SjoGirl

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Thanks all.

Joe I am very sorry for your situation, I can't imagine what it must have been like and must be like.

Elaine you do seem to have had every test known to docs. I concur that they don't seem to have tests that will enable them to understand some things like neuropathy. They can poke you with a cattle prod to tell you that you have neuropathy, but not why. Similarly, there's not much they can do about it when you do have it.

Irish, I agree that looking for things like MS seems to be the type of reasoning used to justify a tap. I just wondered if anyone had one that provided information about other diseases. I am not looking to have one, just wondering because I'm sick and tired of being sick and tired.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Skylar

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I?ve had a spinal tap as part of work up for multiple sclerosis. OMG I will never have another one in my life after all I went through. It?s a very invasive and has potential dangers side effects. I would only have a spinal fluid testing if there was no other option. I would never have it for something untested. Mine was botched and I?m lucky nothing permanent occurred.

Personalized Medicine offers such hope but the reality is its not proving to be effective.... at least with treatment of serious diseases such as cancer. I used to do research in this area. You will still hear these buzz words in marketing because it sounds so wonderful and futuristic but doctors haven?t found basing treatment on those tests meaningful. There are exceptions. Of course this is all being done quietly so patients aren?t aware of the changes. It?s not being done to save money or hurt patients but because of disappointing results over many years.

I often question my doctors about certain tests, especially invasive tests with potentially serious side effects whether or not it will change my treatment. I do this with the vet too regarding my pets and often the answer is no it won?t change anything except maybe the doctors will have a little more information. Sounds like your neurologist didn?t need the spinal tap after all and you were spared.

Sorry to be Debbie downer.