Small Vessel Disease

[Kopai]

I am new here. Recent MRI brain scan ordered by oncologist for cancer showed instead - Small vessel disease. Symptoms started Feb 2020 with morning headaches which are now regular sometimes throbbing esp back of head; sore eyes; tinnitus high pitch & white noise; nausea; intermittent stinging in hands & feet; pain in lower abdomen - constipation and diarrhoea; dizziness when stand and walk; feel wobbly. Feel body movements out of synch my vision. Fear symptoms getting worse. Guidance please. Thank you.

P.s Second year remission from Breast Cancer taking Letrazole and on third cycle of Ribociclib until mid March - now stopped.

[Suzym2u Moderator Vasculitis UK]

Has the oncologist referred you onto see another specialist 🤔

[Kopai in reply to Suzym2u]

Apparently oncologist is going to get in contact with neurologist so waiting. A friend referred me to this site for further info or support. Thx.

[Scarlet_tide]

I would recommend ringing the Vasculitis Uk helpline the number is 0300 365 0075. They are brilliant and will give you information and point you in the right direction.

[Kopai in reply to Scarlet_tide]

Thx.

[vivdunstan Volunteer]

Belatedly replying to this. I've lived with a small vessel cerebral/CNS vasculitis since 1994, when I was just 22. My story is online at

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

I had a 3 year delay before diagnosis. My initial symptoms were remarkably similar to yours (not all described on that web page). My delay in diagnosis affected my outcome, meaning I did not start treatment as quickly as I should have done. Even when I did start the consultant was reluctant to treat me strongly, for fertility concerns given my age.

I would strongly recommend that your case is considered in liaison with a rheumatologist. Neurologists rarely see brain vasculitis, which in its primary form has an incidence of 1 case or 2 per million people in the population. But rheumatologists treat all kinds of vasculitis, and the treatments are very similar.

The danger I think is under treating, or under estimating the extent of progression. It is vital that your doctors are proactive in giving you good treatment to slow things down. With luck it may even be possible for your disease to go into remission. But treatment is key.

Did you contact the helpline? They would be excellent at advising you of a good rheumatologist.

Apologies that it took me so long to reply, but I have been very ill since late February, and am only just catching up with some emails now.