Spinal Tap

Not I. Others have had them for various reasons, not usually needed with Lupus itself. Hope it goes well!

I've had multiple spinal taps. Some I've had headaches bad enough that I required a blood patch to be done the next day. Others I've had no issues with them at all. I think it depends on the doctor who is doing it and how quickly you are moved.

Wishing you the best with your tap, and if I may ask why are they doing one on you?

Hugs,
Barbara

My spinal tap went well. Now I'm waiting for results. They said lupus antibodies in the spinal tap fluid test takes two weeks - ugh. I hate waiting!

My spinal tap results were clean (no autoimmune auto-bodies in the fluid). YEA!!!

It seems weird, though... I have so many symptoms of CNS lupus but my cat scan, MRI and spinal tap were all normal. It makes me feel like a hypochondriac! Am I just nuts?

Sorry they haven't found the reason for the seizures yet. I assume they've also done a full check for MS.

You once listed your symptoms as (mental fog, memory loss, difficulty speaking, balance issues, tingling, itching, headaches, etc) as well as the seizures...

I had all those symptoms and ended up having some neuropsych testing done -- it showed that these things were really happening, and that I'd had a very dramatic and measurable drop/change in cognitive function. (Think 10+ drop in IQ points, for instance.)

Never had a spinal tap, never had much show up on more physical kinds of tests... proceeded to the next set(3) of lupus meds (1. plaquenil, 2. prednisone, 3. cellcept, imuran, Mtx, 4....) Imuran didn't do anything, but Cellcept after about 18 months put me in a kind of remission. My brain function isn't what it once was, but I don't feel so vegetable-like either, and most of the annoying symptoms are gone most of the time.

I guess I'm saying that treatment & improvement is available even if they never "find something".

I think many of us are a little unsure of ourselves and a little sensitive when nothing is found on medical tests because we've been told for years "you are just depressed", "pull yourself up by your bootstraps" (actually had a boss tell me that), "there's nothing wrong with you"... So, thank you for the kind words of support.

Lynnwood, does your MRI show MS? I think my neurologist ruled out MS because my MRI was normal.

My IQ is definitely lower! I was a CPA who had been promoted into management with a promising and successful career. Now I can't follow the story line in a movie, can't read very well, I forget what I'm saying mid-sentence, I can't remember ANYTHING (and if one more person says to me "oh, I forget why I walked into a room all the time too" I'm going to hit them on the head with a rolling pin! - if I can remember to do so...), etc etc etc.

I quit my job in 2010 because with the mental challenges and fatigue I just couldn't do it anymore. I tried to get SSI disability but was denied. This was before we knew I had lupus and I thought my problems were damage from chemo treatments. I had a lawyer and went to a hearing but was still denied. (Lawyer thought I should have won but I got the judge in Illinois with the lowest approval statistics). I'm trying for disability again hoping that having a diagnosis will help get an approval.

I don't know what the rheumatologist will say now that we don't have anti-bodies in the spinal fluid. I don't know if lupus can cause seizures with a clean MRI and spinal fluids. I know the neurologist is saying I have a seizure disorder (epilepsy) and is just giving me anti-seizure meds. He said the cause is "unknown".

Crud - I just complained for 5 paragraphs! Sorry about that!

Hope everybody has a blessed day!

Post Edited (Kimstph) : 12/9/2014 6:03:58 AM (GMT-7)

I get lost driving as well - very weird and scary feeling. I can't drive now due to seizures anyway...

Who should order the neuropschy testing - the neurologist or the rheumotologist? Or does it matter?

I just found one in the phone book for my testing.

It is such a relief to find others that understand!

It mean white blood cells are in the spinal fluid. I think it's signs of infection.