Lumber puncture

[Suzywhizzo]

Dear all, I just have a quick question. Has anyone had a successful lumber puncture which diagnosed their illness and with no reprocussions afterwards?

Thank you

Suzy

[woollysox]

Hi Suzy, I had two lumbar punctures last year which were no problem whatsoever. They didn't hurt at all and there was no headache afterwards though I did have to lie flat for an hour afterwards. As far as I'm aware, the lumbar punctures didn't actually diagnose my cerebral vasculitis but were a part of the jigsaw puzzle, as they confirmed that there was inflammation in the spinal fluid. Hope this helps.

[Suzywhizzo in reply to woollysox]

Hi woolysox, thank u for taking the time to respond to me. I appreciate your reply and yes it does help. I hope you are doing well with your treatment.

Thanks

Elaine

[Crubio81 in reply to woollysox]

Hi, I have MPA vasculitis and showed little effects on my brain. I'm going to receive Rituximab in 2 weeks, what treatment are you receiving?

[Suzywhizzo in reply to Crubio81]

Hi thank u for ur email. I am stil going under the diagnosing process, so not on anything at the mo, but have to go into hospital and they want to do a lumber puncture, but I had a really bad car accident and fractured my pelvis, so I have been advised against lumber puncture by my back doctor, but neurologist wants to do one. ThAnks suzy

[Suzywhizzo in reply to Suzywhizzo]

Lumber puncture, they go they base of spine to draw fluid from spine to check for various things.

[mel-21 in reply to Crubio81]

Hi crubio81

May I ask how did they find out that had little effect on your brain? I mean by what kind of a test?

Was it MRI or MRA? Which part of your brain is effected.

The reason that I'm asking you this question is that I just had a abnormal brain MRI recently that showed nonspecific FLAIR hyperintensities in both of my frontol lobs. Therefore, the radiologist said it could be MS, Vasculitis, infections and other body etiology.

😔

Did you have the same MRI or yours was more specific and it showed that you have Vasculities?

Thank you

[mel-21 in reply to woollysox]

Hi I'm new to this page

May I ask what's the Lumber puncture and how is it done?

I mean what signs and symptoms you should represent to be referred to do this test?

Thank you

[Suzywhizzo in reply to mel-21]

Hi I've been having pain down left side, under left rib and back. Pain radiates down left leg, to calf and ankle. Also numbness and tingling, so they want to do lumber puncture. Thanks Suzy

[mel-21 in reply to Suzywhizzo]

Hi Suzy

Which dr should be seeing for Vasculities? Heart dr? Nerolgyist? Rheumatologist?

I've been calling around since 8 am this morning.

I've called my dr to get order for head and neck ulthrosound which was useless beacuse none of the radiology centers in both my city and next does it.

We do not have any Vasculities specialist or clinics here or around.

Who did you see for this condition.

Thank uou

[Suzywhizzo in reply to mel-21]

Where do u live? I've seen a rheumatologist, cardiologist and neurologist and still no answer yet. I think u nee to contact vasculitis uk as they know people all over the place and r invaluable. Suzy x

[mel-21 in reply to Suzywhizzo]

Hi Suzy

I live in California. I just made an appointment with cardiologist. Beacuse the neurologist didn't do anything since my neurological signs were normal.

I've called the rheumatologyst office and they told me that usullsy they see the patients that have PMR or arthritics not Vasculitues.

So what should I do now. Can cardiologist finds out if I have Vasculities?

Xox

[Hidden in reply to mel-21]

Hi Mel,

There is a Vasculitis charity in the USA which should be able to help you find an experienced Dr, here is the link

vasculitisfoundation.org

If you would like to e mail me at [e-mail] I will try to answer some of your questions. It's usually Rheumatology Dr's who manage Vasculitis. Unfortunately central nervous system Vasculitis is rare, complex and difficult to diagnose as it has many mimics. The gold standard test is a brain biopsy along with scans , a lumber puncture and symptoms.

[mel-21 in reply to woollysox]

Hi

Is lumber puncher the test to diagnose GCA?

[Suzywhizzo in reply to mel-21]

I think they use them for neurological problems, but I'm not medically trained, so u wld need to ask someone who is. Sorry suzy

[Hidden in reply to mel-21]

No, it's usually a temporal artery biopsy.

[Hidden]

Hi yes I had no problems with the lumber puncture it helped with my diagnosis cerebral vasculitus part of the overall picture. Kind regards Diane

[Suzywhizzo in reply to Hidden]

Hi Diane, thank u for ur mail, I appreciate it in trying to make my decision. Kind Regsrds suzy

[woollysox]

Hi Mel,

as I understand it, a lumbar puncture is the taking of a sample of cerebrospinal fluid by inserting a hollow needle between two vertebrae in the lumbar region of the spine. This fluid can, among other things, show if there is inflammation around the brain and/or central nervous system. It sounds worse than it is - it's similar in process to having an epidural but without the numbing and is a very quick procedure.

Apart from helping towards diagnosing CNSV (central nervous system or cerebral vasculitis), which has widely varying symptoms, it can also show MS, cancer of the brain and other illnesses. It's usually done after an MRI or CAT scan shows anomalies in the brain. I had multiple lesions after 3 strokes in 3 weeks.

Luckily, after more tests, I was diagnosed very quickly and put on the standard high dose steroids and Cyclophosphamide for 8 months, then Azathioprine and steroids since.

I hope they find a diagnosis for you soon, Elaine, and wish you the very best

Angie