Multiple Brain Lesions

Does any one have experience of this ? I've done an enormous amount of research to find 'scholarly articles' I'm prepared to take time to decipher ! There's very little out there.

I'm a mystery with no diagnosis- even a biopsy revealed inconclusive Pathology. It's been 6 years now and I try to remain positive but despair is creeping in. My fragile state of mind concerns me.......the Neurosurgical team just don't know what to do with me except suggest 'Inflammation' but Neurologist says a big fat NO.....so contradictions all round. I remain relatively symptom free and Neuro says they'll only treat me if scans change unchanged and I become symptomatic. Apparently "patent presents very well" .......must be the makeup! 😏

I'm desperate to share info with anyone who has a similar case - I'm happy to share more info 😊

Susanmac

4 Replies

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  • Hi Susan, I also have brain lesions and no diagnosis, have been trying to get help for about 10 years, it's good to hear from someone else with similar problem, Anne.

  • Hello Tullyanne and sorry for the delay in reply ! I'm seeing my Neuro team on Thursday so I'll post with an update after that .....who knows ? It could amount to very little ? The appointment is post an MRIs (mri with spectroscopy) have you had one of those ?

    'Changes up there' it would seem ?

    'Changes ' seems to be the only way to get more immediate attention with any sort of urgency ! Complacency has definitely set in among the 'team' ....we'll see ?

    S 🙂

  • Thanks for reply, spectroscopy? Haven't heard of that before, good luck with your appointment, hopefully it'll will be helpful.

    I've an appointment beginning of October, I'm trying not to expect too much, as it seems no one has an explanation for brain lesions.

    Thanks again, 😊

  • What is your age and year of the start of lesion

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