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lumbar puncture/spinal tap

hungary
0 Recommendations

I am just curious if any of you out there who have been diagnosed with E have had a lumbar puncture/spinal tap either during your initial diagnosis of E or anytime during your journey with E. If you have had one, or even more than one, what were the findings? Did you have any oligoclonal bands in your CSF? If yes, how many? Was your CSF ever tested again so many months after you were diagnosed? If so, did the oligoclonal bands decrease in number or completely disappear? I am stuck between the diagnosis of ADEM and MS, and am curious as to others' results with their lumbar puncture/spinal tap. Thanks for giving your input!

Explore topics in this discussion:

Meningitis Stroke Seizures Fever Herpes simplex Pain Lupus Dystonia Encephalitis Tremor

27 replies

IngridGuerci

I had a spinal tap the day I was brought into the ER but I never saw the results. It was my doctor who told me after he got the results of that and all of my other tests that I had HSE. He never gave me another.

Just a quick aside: Before E I had always said that if I had a choice between dying and getting a spinal tap, I'd rather die. Well, here I am in the ER and the doc comes in and says "I'm going to do a spinal tap so you'll have to sit on the edge of the bed and lean over", I replied like . . . .duh . . . ."Okay" and I did. My head hurt so bad I never felt the needle go in.

Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)

lemonplegde

i also had spinal tap but don't remember the results other than encephalitis. It was a terrible time not knowing..i wish you the best.
tish

Jace

I had a puncture done during my the first couple of days when I was unconscious. The only thing reported to me about it was that my white blood cell count was a little over 2000, I think it was like 2008 to be more precise. It was explained to me that the normal count is like 4 or 5. I was admitted to the hospital again a couple weeks later as I continued to have seizures and another puncture was done where the count was less then the previous, but still more then 1000. I cannot recall the second count to a precise level, but the number that jumps in my head is around 1600.

yetzabee

One thing you should do and write down so you can remember is that all your lab results you can obtain them for your own records. I really think its important for yout to have all your papers. You can have someone help you understand them and see what doctors are telling you and not telling. You will be surprised at what they are not telling you.

My lumbar punchar showed multiple gammaglobolins that indicate some infection. It was in the blood and the spinal fluid. It confused the doctors and they thought i had lupus and ms.

ADEM symtoms are similar to the those immune diseases. And adem does mess up your immune system if your not one of the lucky ones to heal quick from it.

Hope this helps some.

yetzabee

By the way one of the things that the doctor did not tell me and it was in the report that I may have had a possible stroke because of this in the medulla part of the brain.

armandsgrandmother

I had a spinal tap during the time my doctor, who happened to be the head of the infectious disease dept at our HMO, was trying to figure out what was wrong. The results were negative, normal. And so he said nothing was wrong. 3 months later a neurologist finally diagnosed E. So I later went to UCLA's biomedical library and found research that said that you can have E and have a normal spinal tap.

Needless to say, I changed doctors.

Hughbetcha

Hi Hungary-

My onset of e. was some 47 years ago, when I was 4. I don't remember very much about it, but after a protracted fever & a grand mal seizure, a spinal tap provided the definitive diagnosis. My parents tell me that getting the spinal tap must have been pretty awful (I bit the Dr. ... sorry doc!), but I think that the procedure may be administered in a better way now. Fast forward to 2003, and my younger sister also had a spinal tap, which once & for all diagnosed her MS. This after 5 years of seemingly chasing ghosts - - neurological symptoms that never seemed to leave a trace on the myriad tests she went through.

Mark

missmariann3

I did NOT have a spinal tap. I had other tests, a HSE tracer test, a 'spit test' that shower HS was in my lungs, and some other new test which i do not remember. For over 10 years my father in law insisted that you have to have a positive spinal test to have HSE. Ususally you do, but it is not necessary if other tests come out positive. I also had a SPECT gram and was in a light coma and had a stroke. Finally I told him that I was given a spinal tap while i was in the coma and he said, "I knew it all along." I did NOT have a spinal tap though it is a usual way to prove E. The hospital I was staying at did not run them routinely.
Mariann

missmariann3

anyone else NOT have a spinal tap, but have more advanced tests?
Mariann

Tpenkhus

My wife had 4 or 5 total because they wanted to be sure they weren't missing latent meningitis or something else that would cause cranial inflamation. None of them were even close to abnormal. Sounds strange but it was disappointing really. If they had been abnormal we would have had an explanation.

BobTX

My family fired my first neurologist when it was strongly suggested by a second neurologist that I get a LP and the first would only treat me for migraines. I was in such pain I, like Ingrid, never felt the needle. Normally releasing CSF due to a spinal tap gives people a bad headache. I already had a "bad" headache and the releasing of 3 or so vials of CSF actually lessened my headache because it lowered the intracranial pressure. The time I was supposed to be laying flat after the LP I still could not due to the intense headache. I was inclined in my hospital bed and doing a little better.

Anyways the results came back with a high white count and the intracranial pressure was more than double what it should have been. My case was a clear cut result of a virus. I know it must be frustrating to others to not have a clear result due to a spinal tap.

Bob

MichelleN

I didn't have a spinal tap because if I had it would have pushed E that much further into my brain. I don't know what tests if any I had, but I probably had some.

Michelle

missmariann3

Don't get me wrong, that is a good test. just sometimes unessary as Michelle said.
Mariann

everhopeful

I had my lumber puncture MANY months after being ill and was told the results were clear. Now MANY months after the LP, the doctors have decided it was Encephalitis that originally made me ill.

yetzabee

One thing I did notice after the lumbar punchar that taking out some of the fluid for me releaved head pressure. Felt so good, eventually it came back slowly.

IngridGuerci

In addition to my spinal tap I had an eeg, and ekg and an mri. That was before they admitted me. The next day and every day after for the first five days I had more mri's in two stages, regular and with contrast.

Ingrid

missmariann3

I had more of a situation like bob's.
Remember I had dystonia and it was almost impossible for me to keep my head still. It was impossible to keep my head and neck from tremor. So impossible that I couldn't have any kind of blocks when having my two kids. I had to have them naturally with a pain shot cause i could not keep my head from moving. Same deal after I had a thyroid tumor out. I was not able to keep my neck still.
Mariann

missmariann3

now I get shots in my spinal column for spinal problems, but they use dye first, then prednisone.nothing comes out .
this week my neuro told me "you know that this is a permanent and growing condition, a spinal degeneration disease". I hope I said that right. I am kind of sad about this, but glad i live in 2009. I realize all the things i won't do., but am glad to have help. This is not related to E, except E made it go faster.
Mariann

plbubba

My Mother had a LP done on Tuesday after going to ER on Sunday. The neurologist told us he thought it might be menigitis but the fluid was clear. He told us that it is not uncommon for the fluid to look clear at first. He said it would take up to a week to get the final results back from all the test from the LP and that he was sure it was viral so he was going ahead and start the treatment. The earlier the viral meds are started the better the outcome will be. She also had Cat scan, EEG, MRA.

Thazooma

Every test they ran on my husband came out negative. CTscans, MRIs, EKGs, EEGs ( I'm surprised they were able to get any results from the 1st EEG, his shaking was out of control). They did they spinal tap about three days into his hospital stay. The "early" results showed nothing. The final results were not received until a week after discharge. They showed positive for HSE. BUT the neurologist started him on anti-viral meds right after her first evaluation of him. I swear she saved him from major brain and nervous system damage.

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