@Katy79

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Katy79

All new

Hello, this is my first post. I'm currently somewhere between a CIS diagnosis and MS (having been told I meet the revised McDonald criteria for MS based on my MRI and current (very mild) sensory CIS). I don't (think) I know anyone with MS and just want to reach out and share my story and feelings with people who may recognise some of what I'm going through. I'm also holding back telling too many people in my real life to get my head in the game before dealing with questions/ assumptions/ labels and prejudices. I'm a 36 year old woman. Three weeks ago I noticed I had numb toes. This spread up my leg to my groin over 48 hours. It was mild - more disconcerting than anything else. In googling a stretch to help (as I thought I had a pinched nerve) I read about cauda equina, spooked myself and went to the Drs. An initial MRI of my lower spine showed 2x hyper intensities in t11-12. A further full MRI with contrast showed dawsons fingers and other lesions in my brain, on my brain stem, every level of my c- spine (save lucky c-4) and a third lesion on my t-spine. The T- spine lesions are enhanced (although the numbness has all but gone (even before starting starting a 5 day course of medrol). I saw a specialist MS neuro on Friday. I think I liked him - he was very direct. I have been left with CIS status for the moment, with a recommendation for a follow up appointment in 4-6 weeks and probably a further MRI in 3 months to see how "active" I am before deciding on DMDs etc. I think I'm also due to meet with his MS nurse. I appreciate, having read some other people's journeys to diagnosis, this is pretty speedy. I'm incredibly grateful for my mild symptoms to date, spooked by the scan results and feeling much like a sitting duck. We've been told to think about whether we want children, given my age and the impact on choice of treatment. This has been a topic of non-committal discussion for us for three years now - not sure I'm going to be able to land the answer in 4-6 weeks (pre - follow up consultation) - especially with all the new uncertainties of the future. The number of lesions, especially those in the spine, has me spooked. I've been looking back to see what other neuro episodes I may have had undetected. I suffered BPPV last summer (worse on hot days)- this was seemingly fixed by EPLEY but my neuro thinks it may be a contender. Odd (short) bouts of double vision (15 mins max) I've put down to dry eyes and contact lenses, occasional tiredness down to a full on job, long commute and active life (or PMT) and loss of thought mid- sentence I've put down to distraction/ too much multitasking. Possibly related to MS, possibly all perfectly normal! I' ve read a lot about Lemtrada. I'd be very interested to hear from anyone who has had this as a first line treatment/ with only mild symptoms. Whilst I have CIS status I know this isn't on the table for me, but it is a drug my neuro spent some time discussing (given I already meet the MS diagnostic criteria off of the MRI, I think he just wanted to give me time to get my head in the game). There are obviously risks (and it may be easier to get comfortable with them when the reality of MS has already hit home) - but the thought of a high efficacy rated induction therapy which may significantly delay (if not totally halt) progress and give the body chance to repair after just a couple of treatments certainly has merits (time is brain etc - especially given my lesion load- and baby dilemma). Although my vitamin levels are normal, I've started taking Vitamin D3, B12 and Omega 3 daily (anything to avoid being a sitting duck!). I also take iron for low iron already. I have a pretty healthy diet (lots of fish and veg) and exercise - so think I'm going to continue as I am with that regard (as advised by my neuro). Trying to stay pragmatic and hopeful - and my boyfriend has been a complete hero. I've written way more than i meant to (therapeutic to get it down). Well done and thanks to anyone who has made it through. Wishing everyone a "good day" - and strength, tenacity and good humour K