Hi Sarah,
Feeling frustrated is absolutely normal - you doubtless want to get your existing symptoms under control and understand what your choices are re. disease modifying drugs (DMDs) so you can start managing this condition.
Try to be kind to yourself in these next four weeks and, hard as it sounds, try not to stress. If you have chance, it might be worth using this as an opportunity to do a bit of background reading on RRMS and the available DMDs so you can have a sensible and productive conversation when that appointment comes round - and you can make sure you get all your questions asked. That said, stick to sensible sites - this one, MS Trust and Shift are all sensible and moderated (some of the other comments boards and forums can get a little crazy).
Please do cling on to the hope that you will be able to live a normal life. I know I do. MS is a “snowflake” disease - highly individualised - but I’ve summarised my story and outlook below in case it helps.
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In Feb 2016 my toes and groin went numb. Not painful or disabling - just odd. An MRI of my lower spine to rule out an emergency spinal issue showed “two t-2 hyperintensities suggestive of demylination”. A week later, via a private referral to a neuro and a full CNS MRI, I was told I probably had MS (as I had lesions all down my spine, brain stem and throughout my brain). This was confirmed a week later, at a further private referral to an MS specialist neuro.
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I had a three month wait to be transferred onto my MS neuro’s NHS book for treatment. We used this time to discuss available DMDs (I knew I wanted lemtrada from the outset) and have a further scan (in June - 3 months after the first). This showed one new brain lesion - sufficient to diagnose me with “active” RRMS and qualify me for Lemtrada
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I had been given steroid tablets in March and my numb toes and groin very quickly cleared up. I’d had no new symptoms and my scan showed that a number of my old lesions had partially repaired (hooray!). Touch wood, a year on and I’ve still had no further relapses.
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I think of myself as active of mind and body. I was (and am) fit an well. I’m a senior corporate lawyer working for a FTSE 100 financial institution and manage a team and busy day job. I commute in and out of London each day and go to the gym at least once a day. I’m also a long distance walker - and even on the numb toes was trekking 20+miles a day at weekends. Somewhat ironically, I’m fitter, faster and stronger than before diagnosis - possibly as a result of every workout and every PB feeling like a punch in the face to my MS
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I’m hopeful that by taking early, aggressive treatment against my MS and by continuing to live a healthy, active and balanced life I give myself the best possible chance of staying this way. I received Round 1 of Lemtrada in August 2016 and am just gearing up for Round 2. So far so good, but this is a marathon and not a sprint.
-When I was diagnosed I felt like the bottom of my world had dropped out. The messages I tell myself now are:
(i) MS is not necessarily a fast track to a wheelchair. Something like 80% of pwMS don’t need one 20 years after diagnosis. And there are fab people of this board living positive lives with mobility aids if it comes to that
(ii) improvements in DMDs over the last few years should that statistic in our favour. MRIs only started being used widely in the 1980s, and the first DMDs were only available in the 1990s. Today there is better choice of drugs with increased efficacy - and as of 2015 the ABN have issued guidance promoting the early use of these drugs - and there are more drugs in the pipeline. Whilst there is still no cure, it is not the disease it once was
(iii) there are drugs and treatments that can help alleviate symptoms caused by relapse
(iv) there are things we can do to help look after ourselves, to avoid co-morbitities that could make MS symptoms harder ro deal with or to help manage the MS itself (e.g. Vit D3 supplement, healthy diet and exercise, sleep)
A year after diagnosis there is not a day I don’t think about it - but I consider myself lucky with my (lack of) on-going symptoms and the availability of treatment. I value my health in a way I didn’t before when I took my wellness for granted. Im getting married next May and we are looking to buy our forever home - which at this stage will not be a bungalow! If I get mobility issues down the line, we’ll cross that bridge when we come to it.
So I see my MS as a shadow that is with me everyday, but for the moment the sun is high in the sky and it casts little shade on my life. I’m wary of the day the sun will start to set - but for now life is god and im optimistic.
Very happy to talk off line if it would help
K xx
