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Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 11/24/2014 9:09 PM (GMT -6)   
I have a spinal tap scheduled on Dec 1st -EEK!!!

Anyone have one of these and how did it go?
Kim
Breast cancer survivor, Lupus, Seizures

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 11/24/2014 9:57 PM (GMT -6)   
Not I. Others have had them for various reasons, not usually needed with Lupus itself. Hope it goes well!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/24/2014 11:07 PM (GMT -6)   
My sister had one. She was left with a nasty headache because she was moved too soon afterwards. Otherwise it went okay.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/24/2014 11:12 PM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 11/25/2014 8:00 AM (GMT -6)   
I think I'm getting a spinal tap because I'm having seizures. I have all the other CNS Lupus symptoms (mental fog, memory loss, difficulty speaking, balance issues, tingling, itching, headaches, etc). My MRI and brain CAT scans were clean. I don't know what the neurologist is looking for because he said if I had Lupus anti-bodies in my spinal fluid I would also have had an abnormal MRI - which I don't....

Post Edited (Kimstph) : 11/25/2014 7:03:27 AM (GMT-7)


Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/2/2014 10:55 PM (GMT -6)   
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!
Kim
Breast Cancer Survivor, Lupus, Seizure Disorder

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 12/4/2014 6:11 AM (GMT -6)   
Waiting is no fun! Try not to think about it too much :)

I had seizures as a teen. It ended up being blamed on hormones and nerves misfiring. They stopped as abruptly as they started a couple of years later. Seizures are scary, I feel for you.

Let us know your results when you find out! Sound like your neurologist is being prudent which is a good thing!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/8/2014 8:22 PM (GMT -6)   
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?
Kim
Breast Cancer Survivor, Lupus, Seizure Disorder

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/8/2014 9:09 PM (GMT -6)   
Not nuts....
Maybe it's just not showing up in the tests?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 12/8/2014 10:57 PM (GMT -6)   
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".
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 12/9/2014 5:43 AM (GMT -6)   
Same with me, when my seizures were happening there weren't any concrete physical findings to support what was causing them but nonetheless I was having them! There was no denying that!

So you are most certainly not "nuts" ;)

Has the neurologist given you any idea as far as treatments etc?

I was advised at the time to never take the birth control pill or any hormones. That is all I can remember except for the dr's joke to not walk without a helmet.. har har. It was years ago though. (like over 20 yrs ago) (I'm old) lol

Now in hindsight my drs believe I have had lupus symptoms since I was 12. Inflammation can cause all kinds of disturbances in my opinion. Sometimes there isn't an easy answer or fully evident explanation. Hang in there!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/9/2014 7:00 AM (GMT -6)   
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)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 12/9/2014 8:06 AM (GMT -6)   
My MRI showed nothing, so no MS dx...never were really any ideas in that direction in my case.

Get neuropschy testing!!! It really helped with the SSD hearing! I may have gotten disability without that, but it proved my cognitive dysfunction kept me from working. (Had a systems software development business w/employees, was about to finish my PhD; then couldn't follow a 20-min sitcom. I know EXACTLY what you are describing.)

My personal theory is that there was inflammation of some sort in my brain -- just something we don't know how to test for yet. The Cellcept put me into remission!!! I really never thought I'd be as good as I am today ever again. I didn't even drive for 3-4 yrs as I'd get lost at the end of my street after living here over 30 years.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/9/2014 8:19 AM (GMT -6)   
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?
Kim
Breast Cancer Survivor, Lupus, Seizure Disorder

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 12/9/2014 8:31 AM (GMT -6)   
I don't think either, really, although both should be familiar with it. I think my insurance company asked for it, then I talked to the rheumy. But my disability attorney knew where to go. (Had to have one to deal with private disability policy that suddenly changed their minds about paying..long story. Different from a SSD attorney.) He sent me to the neuropsych I used. It's a special kind of shrink that just does testing for all kinds of brain function stuff...

Email me and I'll send you the link to the Dr I used, that will give you enough info, I think. (We aren't supposed to recommend Drs out in the open, don't want HW to get into legal trouble.) May not have time till this evening, tho.

Or do a search locally for "neuropsychological testing".
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 12/9/2014 7:35:30 AM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/9/2014 1:28 PM (GMT -6)   
I just found one in the phone book for my testing.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 12/9/2014 6:57 PM (GMT -6)   
I've gotten lost driving home from work a few times. Called my husband crying from a parking lot. It is one of the worst feelings in the world. Or forgetting how to pronounce a word and it comes out slurred and incomprehensible.

When I'm flaring pretty bad I will all of a sudden just forget how to do something like the POS system at work and I'm stuck, just completely blank. Knock on wood it hasn't been too bad lately.

Complain away Kim! Totally understand!!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/9/2014 8:53 PM (GMT -6)   
It is such a relief to find others that understand!
Kim
Breast Cancer Survivor, Lupus, Seizure Disorder

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/11/2014 12:23 PM (GMT -6)   
Anybody know what this means on spinal tap (CFS) results?

GRAM SMEAR: RARE WBC'S SEEN
Kim
Breast Cancer Survivor, Lupus, Seizure Disorder

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/11/2014 1:23 PM (GMT -6)   
It mean white blood cells are in the spinal fluid. I think it's signs of infection.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 12/11/2014 1:32 PM (GMT -6)   
Thank you!
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