Vasculitis UK

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Lesions on brain

Hi,

Had a recent brain scan showing some lesions, probably not ms and more likely to be caused by blood vessel disease.

I was wondering if anyone had had such findings with vasculitis. I strongly beleive that whatever is causing my problems affects my lungs and is responsible for my weakness and numbness of limbs.

I have a raised esr and IGA but normal crp and hashimotos, no other antibodies present.

Thanks Christine

15 Replies

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Hi Christine,

I have been following your posts and realise what a journey you have had so far. There are a few types of Vasculitis that can affect the blood vessels in the brain, including Central Nervous System Vasculitis which is very rare.

Have you ever managed to get a referral to a specialist multi disciplinary Vasculitis clinic to have it ruled in or out definitively?

You can e mail me at lynn@vasculitis.org.uk. If you tell me where you are located I can find out where the nearest specialist is.

Thanks i will e-mail you.

Christine

I see that there was a sign of demylination on the scan. Did you say you were having trouble walking? Not MS? Said Who? MS specialist?

The radiologist said could be some form of demylunation however neuro said he did not beleive there was anything signoficant. Not actually seen neuro yet To be honest i dont know whats going on...

Christine

If I were in your shoes, I would get an immedate referral to MS speclialist. There is no such thing as insignificant demylination. It's an immune attack on your nerve sheath. It could be an early stage.

Yes i think maybe i should do that. Whatever is going on is changing quite quickly

Im having visual problems and sometimes at the same time as numbness in my legs but not when my arms are numb. The vision problems are flashing lights which iv noticed when moving my eyes and wuth walking. Also objects appearing in my view from nowhere. I dont think its migraine as iv had migraine including occular migraine for years and this does not feel like that.

Thanks Christine

I also noticed your very odd (unusual) thyroid levels. You could always PM me if you like. Good luck!!

Dear Yorkshiregirl,

I know all about Brain Lesions, my brain looks like 'a Nebula' apparently. Experts/Neurologists/Doctors who don't know me always say that it's amazing that I am still alive. That has been the case for the last eighteen years!

Admittedly I DO have 'problems' and have to be 'cared' for-in terms of needing someone with me, when I go out any distance. (I'm 'alright' just popping up the shops, and so on).

I would be happy to discuss 'things' further, with you, if you would like me to.

In the mean time, Happy New Year-best wishes.

AndrewT

Thanks Andew,

Maybe i could pm you, if thats ok?

I KNOW that I'm stupid, but what is pm????

I took it to mean private message, not sure if theres another word for it.

There Is a way of swopping email addresses but I don't know how. May be Email John/Susan?

Hope to hear soon, hope you are well (OK well-ish)

AndrewT

Hi christine

I have wegeners and believe strongly it is affecting my brain. Mri x 2 normal but egg x 2 abnormal. Due to see specialist neurologist who deals with vascular disorders.

I would very much like to hear your story.

Have to go now but please let me know your disease history.

Henry

Hi Christine, I was in more or less the same position as you, I had lesion that looked like me but other lesions that weren't . Amongst other things like I have left foot drop. I was finally diagnosed after nearly 5 years of tests Etc in October 2012 with cns vasculitis.

If you want to contact me you are more than welcome to.

Take care

Joanne

Dear Yorkshiregirl44

yes my MRI showed lesions in frontal lobe and a bigger one on my pituitary gland ... have had some dodgy moments in the last 12 months.. memory is noticeably affected, loss of vocabulary and judgement (nearly got scammed on holidays :-() ... have had significant neuropathy.. mainly sensory (burning etc) but have also had issues (weakness/ paralysis) with diaphragm and breathing muscles and my pelvic floor/bladder got a bit dodgy... am certainly interested in hearing about your journey more.. I had one appointment with neurologist who ordered the MRI.. he didn't want to see me again because he knew it wasn't MS and he only deals with MS... ... so have not had a neurologist read the report or check the films yet... hopefully 2016 with a new GP and a new Rheumy will help.. GP has already flagged he will send me to a new neurologist... fingers crossed...