Hi again everyone.
I have a silly question. I am waiting for my consultation to diagnose my MS. I have been back and forth for 6 years and my last Reg said he thinks they missed a lesion in my neck so sent me off for another scan, telling me he was fairly positive about my diagnosis so I was quite pleased with that. Anyway, I managed to get a copy of my radiographers report and since my last MRI 4 years ago I have “multiple” new lesions in my head and cervical spine consistent with demyelination. They specifically list 3 in my head and “several” new in my spine. Does this mean my MS is active? I don’t currently have any symptoms as far as I’m aware, other than lhermittes, a good case of the dropsies and fatigue, but to be honest I put the latter down to having a one year old! I’m quite happy to wait for my appointment as I know the score, but want to get my information together before hand so I know the right questions to ask. Obviously my main concern is staying healthy for my little boy. I don’t particularly want to take meds but if it means that my ms will be slowed and I can carry on running around playing mum then that is my priority and I wouldn’t think twice, I just want to know if I’ll be eligible for them.
I have no technical expertise at all, so this is only my personal understanding (certainly scant and partial, quite possibly faulty) of these things seem to work. I think that lesions - areas of damage - will tend to show up on an MRI scan whether they are scars from old damage or signs of new MS activity. To distinguish between old and new activity, they sometimes inject some dye into a person and the dye picks out the inflammation that indicates an active and inflamed lesion rather than old scars from previous attacks. But they don’t always need that to tell the difference because they have other information to go on - what your history is, what troubles you are having (or not having) now etc. It was years after my dx that I first had an MRI with the dye business - I certainly hadn’t needed that for them to decide what the problem was.
I completely agree with your logic of doing whatever you need to do to minimise the impact of MS (if that’s what you turn out to have) on your health and active role in parenting, and family life, working life and quality of life generally. Your medical advisors will offer guidance on all that, if it comes to it.
Alison
Hi Jessica,
im also waiting for final diagnosis, but like you have limited clinical symptoms (zero at the moment in fact - I has a week of numb toes which radiated to the groin and triggered my initial MRIs). Like you I have a number of lesions - dawsons fingers in the brain, a lesion in the brain stem and ones all down my c- spine and t- spine. My MRI was with contrast and two were enhancing.
My understanding of the updated Macdonald diagnosis criteria is that it is possible to diagnose MS from a single clinical episode if that MRI shows dissemination in space (shown by the location of the lesions) and time (shown by simultaneous enhancing and non enhancing symptomatic lesions). Some Neuros are prepared to diagnose “active” RRMS (which requires two episodes on two years (I think)) on the same basis.
I think I 'm less drug adverse than you (although I don’t have a small child to make me worry about side effects) and am hoping to use the MRI evidence (and bout of vertigo last year diagnosed at the time as BPPV but in hindsight may have been a product of the brain stem lesion) to push for aggressive DMD treatment from the get go.
Hope you get the answers you are looking for from your neuro appointment. I’d be interested to hear how you get on. My next appointment is next week.
Good luck and stay well
Kat
(ps - apologies for typos. Written on the train on the way home from work on a badly behaving phone)
Symptomatic = asymptomatic
Thank you both for replying. I have had numbness 3 times in the past which started all the initial investigation, then a bad case of optic neuritis 4 years ago which was my last MRI. Luckily I had the EVP tests to show the damage to my optic nerve because my scan came back relatively clear. It’s the lhermittes that I’ve also had intermittently before but hasn’t gone away this time for best part of a year which got me referred back to neuro but that’s my only symptom currently really that incan definitely put my finger on. But then obviously something must still be going on for me to now have a head and neck full of lesions. To be honest I would love to start a drug treatment. If much rather that and face the side effects than suffer a severe attack because then I would struggle. It’s the waiting game I hate!
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Hi Jessica - couldn’t agree more re. the waiting game and preferring to face the potential side effects of the drugs rather than suffering a severe attack. Never felt more like a sitting duck (quack quack). I’m impatient at the best of times. Good luck for your consultation.
K xx