Csf protein

[Perkles]

Did anybody have raised csf protein levels as part of their Vasculitis investigations

[Hidden]

Hi Perkles,

A lumbar puncture isn't a usual investigation for Vasculitis and would only be done if someone had neurological symptoms. Vasculitis affecting the Central Nervous System is rare so I am not sure how many replies you will get.

[Perkles in reply to Hidden]

Thanks I had one when I was in neurology ward for ten days

I have widespread neuropathy

It was a skin biopsy that showed Vasculitis

I am at the Vasculitis clinic next Wednesday just wondering about all my symptoms and tests the last 12 months

[Melon]

Keyes is bang on (as always) 😀 I had one as MS was suspected but final diagnosis was PCNSV. Lumbar puncture revealed nothing.

[Perkles]

Unfortunately I had a neurologist that refused to let me see a Vasculitis consultant and said my blood screening for Vasculitis was clear

He gave me a bollocking for arguing with him

A skin biopsy a month before said otherwise but I didn’t know anything about Vasculitis at that point so couldn’t really argue

Now I’ve joined here and spoken to John I know a lot more

[oiseau222]

I did, as part of the investigation into possible CNF vasculitis, along with my systemic vasculitis. It was prompted by parietal lobe demylination (seen in a PET scan), stroke-like symptoms and other blood tests.

Have you discussed with your doctor?

[Perkles in reply to oiseau222]

Yes but it was the neurologist who just said he was worried

I see a proper Vasculitis specialist next Wednesday

[oiseau222 in reply to Perkles]

Don't be worried or surprised if the doc says it's inclusive. The next steps for me were a brain angiogram and one I didn't do..a brain biopsy. The bottom line for me is that the treatment would be the same as what I'm getting now. The bad part is I wish I had a specific diagnosis, but I probably never will. Please keep me posted; I'll be thinking about you.

[vivdunstan Volunteer]

I've had 2 lumbar punctures. Nothing too untoward in the results, although I apparently had increased banding in the second. The neurologist dismissed it as not significant.

I believe it's quite common for cerebral/CNSV vasculitis patients to have normal or near normal lumbar puncture results. It's most useful as a test to rule out MS.

I was diagnosed in 1997 after falling ill in 1994. Mine is a very MS-like form of cerebral vasculitis. But I'm still here

[oiseau222]

My lumbar puncture was ordered by a stroke neurologist who was working with my rheumatologist to determine the underlying problem...which he never did. He said that the definitive answer was a brain biopsy, which I wouldn't allow. Also, since I've been on immuno-suppressants, I didn't see how they would get an accurate response.