Lumbar puncture or not?

[trc1962]

Been posting lots because of what I think is neuropathy especially in my legs. I had the spine MRI's 2 weeks ago and they were clean and my brain MRI was unchanged in March from 2003 so the doctors said no need for a lumbar puncture. Part of me wants to argue for getting one to rule out protein there. The pain, tightness and spasms in my rump and legs and the noise (like buzzing) all over my body bug me. The neurologists says a skin punch really isn't necessary either as it wouldn't change the treatment plan but as the Summer winds on my pain, stiffness and weakness continue and I feel worried that more isn't being done to figure it out. I am on 2000 mg of cellcept a day and the rheumy wants to start dropping my prednisone dose down 5-10 mg each week and he wants me to take Cymbalta for pain. Not thrilled about that as my mouth is a dessert and I am dealing with some receding gum lines because of it. Anybody feel like I am remiss to not ask for the puncture? I have a chiari and so we never have done the poke because I have to get a couple of blood patches to close the hole. Just want ideas and get so much from here.

[Carolina]

Dear trc,

I had profound PN when my testing began, which included 3 MRIs and 2 CT scans, an EEG, Nerve conduction tests and a lumbar puncture.  This was in 2010.

No cause for my PN was found, then, or since.

I guess I wouldn't press for one unless you felt it could uncover a cause that had a treatment that would stop or ease the PN.

But that is my thought now.  I just did whatever the neurologist ordered.

A gazillion blood tests, too.

I'm sorry you are suffering so.

Hugs, Elaine

[irish]

With the Chiari I think I would pass unless absolutely necessary. Sometimes a test considered to be quite safe can have some strange end results. If your docs are treating you for your issues without the lumbar puncture that is the best one can hope for.

Have they ever considered IVIG??? You need to have a doctor who can write up a good need for the IVIG for a neuro condition. There are many people getting IVIG for neuropathy that don't have a specific diagnosis but have a doctor who is able to work with the system. IVIG might even  be ordered for another autoimmune disease with resultant improvement with another issue such as neuropathy.

Example: I have been on IVIG for 10 years for Myasthenia gravis ( a qualifying disease) and as a secondary result it also has helped my immune deficiencies. Good luck. Irish   

[trc1962]

Yes, the chiari is a concern and when I got my last poke (23 years ago when I had my son) I had an awful time getting it to clot up and stop seeping. think what I need to focus on is finding a dr. that will treat it with either rituxan or IVIG and most likely that would mean a trip to Seattle - nothing really on the east side here of Washington, my rheumy is kind but doesn't believe sjogren's presents with PN but dryness and my biggest problem is the neuropathy. How to find a dr. in the seattle area that would treat the neuropathy with something besides cellcept? Thanks to you both for suggestions.