Hello, I am new to the group, and am not even sure I belong...From Parkinsons to possible Cerebral Vasculitis plus MS.?? Let me explain..

[Bools33]

Hello, I am 55, I was diagnosed with Parkinsons over 18 months ago, after a few months the diagnosis was changed to Atypical Parkinsonism, until 6 weeks ago. I was taken into hospital with Optical Neuritis, was put on cortisone for 6 days...also had so many scans, MRIs, bloods etc etc...o which I was told I have NO parkinsonism. ok. So further blood tests, the three Neurologists all seem to think I have Cerebral Vasculitis and /or a rare form of MS. SoI am waiting to go in for my lumbar puncture, have to wait till the cortisone is well and truly out of my system. So May 18th I am set to go back into hospital. Meanwhile I wait, wondering what???? I have read so many things on Cerebral Vasculits and all the symptoms all seem to point in that direction. I have so many questions, I live in Mallorca, Spain, and this site is the only site I can find, so do hope I am allowed to stay.. ...Before I bore you all senseless, two questions. actually four ... Does your skin itch badly . like most of the time, Do you have joint pains, my knees are extremely painful, always painful together and at the same time as well as the rest of my achey body.....do you perspire badly, as in hot and running in perspiration and then cold body temperature. and finally when diagnosed what was the prognosis?

Sorry am very new to this. Thankyou for your time

Sally

[vivdunstan Volunteer]

Itching and joint pains wouldn't be typical I think for cerebral vasculitis, but could occur. Also perspiration is more common when people are on steroids or chemotherapy, again not typical for cerebral vasculitis. Could it be the menopause? (sorry I don't know if you're male or female)

I fell ill in 1994 aged just 22, and was finally diagnosed with cerebral vasculitis in 1997. Mine is a very MS-like form. At diagnosis I was told that my case was progressive, but that they would try to slow it down with drugs. They hoped to get me off the immunosuppression, but I needed to stay on it long-term. And had a huge relapse in 2004 which was very hard to stabilise, and many treatments were tried. Finally I had Cyclophosphamide chemotherapy in 2012 (I insisted on it!) which I should probably have had much sooner (ruled out by medics for their fertility concerns, not mine). I've been better since.

My story is online at

vasculitis.org.uk/living-wi...

Cerebral vasculitis is very hard to diagnose. The gold standard test is brain biopsy, but it's dangerous, and can give a false negative. Angiogram can also help. Lumbar puncture results may be abnormal but not always. Visual evoked potential tests are particularly useful for distinguishing between MS and cerebral vasculitis.

Happy to answer any other questions. Good luck!

[Hidden in reply to vivdunstan]

Essentially no definitive test?

[vivdunstan Volunteer in reply to Hidden]

If a brain biopsy is positive that is definitive. But otherwise no.

But a brain biopsy can be done and say negative even where the disease is there.

Blood tests are also frequently normal for this form of vasculitis, with often no signs of inflammation and no positive ANCA result.

[Bools33 in reply to vivdunstan]

Thankyou, well seems like it is a waiting game...no I have been through the menopause after I had a hysterectomy about 8 years ago...yes am female lol ..all done and dusted. Thankyou for your reply and wish you all the best ...shall go on to your story ..xx

[Hidden in reply to Bools33]

I’m in a similar position to you symptomatically and awaiting my third brain and cervical MRI now to see if existing white matter/ small vessel disease has progressed.

However I do have Hypothyroidism and Sjögren’s. I was previously diagnosed with RA but then my symptoms became increasingly like MS. I had a lumbar puncture which showed paired oligloclonal bands but no large nerve fibre involvement so they just said a systemic process was occurring as they already knew because of my high inflammation levels.

No Cryoglubulins have been found yet and all tremors, tinnitus, nose bleeds, visual disruption, extensive small fibre neuropathy, Ataxia, kidney infections/ UTIs etc are assumed to relate to my histologically confirmed Sjögren’s. My ANA is clear positive but not specific antibodies of the ENA panel.

Similarly to Vasculitis, Sjögren’s can be misdiagnosed as MS and cause Parkinsonism. Itchy skin is common as is liver involvement, ocular neuritis and joint pain/ inflammatory arthritis. My knees are regularly excruciating. hopkinssjogrens.org/disease...

[Hidden]

Thank you, vivdunstan.

[Hidden]

I don't usually get to read V patients with ON. If there were, I'm sure we would hear from someone. It would be interesting. ON, however, it's known in MS as far as I am aware. Symptoms you describe screaming out for MS to me. Maybe you were misdiagnosed with PD before.

What is it that your clinicians are convinced that you had V? Imaging? If you don't mind me asking this?