It’s exactly 3 years since I was told I had demyelinating lesions across my brain and down my spine and that I very probably had MS. It was a bolt from the blue - the only symptoms I’d had were numb toes (which lasted a couple of weeks) and a numb groin (which lasted a few days). The anniversary has made me a bit reflective. My god the shock and fear and horror of that time. My heart goes out to each and every person on here going through it at the moment. There are too many of us. Please keep hope. Whilst none of our journeys are the same - and as I’m only 3 years diagnosed and 39 mine is far from over (at least I hope!) - please remember things can and hopefully will get better. My summary of life since those first, scared posts: (I) MRIs -3, with a 4th due on 25/03 (my annual MOT) - fingers crossed for NEDA (II) New lesions - 1 - non-active. It revealed itself in a scan in June 2016 (3 months after the initial MRI referred to above) and was sub-clinical (I’d had no new symptoms). I was oddly delighted as it was sufficient to show my MS was active and qualify me for lemtrada (my DMD of choice - I very quickly decided on the “hit it hard and fast” approach). The scan I had the year after R1 lemtrada showed signs of improvement / my lesions were less defined. I’m now told I have a “light” lesion load. (III) clinical symptoms - 0. My neuro describes me a asymptomatic. My toes can go a bit numb if I over do it in the gym, but come back quickly in c. 20 mins. (IV) Rounds of Lemtrada - 2. Aug16/Aug17. No real infusion reactions and no post treatment infections etc. My immune system is now back to normal levels. No secondary auto-immune issues - yet - still a long way to go before I’m cleanly through that gauntlet (V) Bloods tests / weeing in pot tests to check for secondary auto immune diseases etc - too many to count - and with a few more years of monthly tests to go! But it does mean I see my MS Nurse every three months and she’s lovely (VI) Marriages - 1! After trying to get my boyf. to leave me on diagnosis, I realised he was in it for the long haul come what may and we made it official on 12 May 2018. We had a honeymoon trekking up sand dunes, kyaking with seals and safari hiking across Namibia. Bliss. (VII) New physical activities taken up - 4. (a) Running! Having always said I couldn’t run and that I wasn’t built for it, fear that one day I might not be able to walk gave me a kick up the bum to stop making self limiting excuses. I’m not fast, but I’ve managed a few 10km races within the hour (53:53 PB) and joined a running club. I used parkrun to get into running (free, weekly, timed 5km runs or walks in parks across the UK). I’ve completed 74 parksruns across 38 different courses (including one along the skeleton coast in Namibia on honeymoon) and am now an official ambassador for parkrunners with MS**. I was interviewed by Vassos Alexander (Virgin Radio/R2) for a pod cast about running. If you had told me that this was in my future in March 2016 I would have told you to cut back on the shandy! (b) Boxing - I have had a personal trainer once a week for years. When I told him about my diagnosis (as I was going through it) he got out the boxing pads and gloves and let me punch away my anger, fear and frustration. We’ve done it every week since and I’ve started boxing classes. Amazing cardio, core and cognative work out (NB - pads only - I don’t get hit in the head - I have enough brain damage thank you!) (c) Paddle boarding - my husband brought me lessons as a valentines gift last year. So much fun - and another great core workout! We’ve only had a few sessions but are looking forward to the school opening up again at Easter after the winter break (d) Skiing!! - we spent Christmas week skiing in Bulgaria. I’d never been before but loved it so much we booked a second weeks skiing for valentines day week in Austria. Again it was brilliant! I’m still rubbish - and still limited to Blue runs but I am doing parallel turns now. Cant wait for next winter!! (VIII) 100km walking challenges completed - 1. I was a distance hiker before the MS diagnosis - and one of my big fears was that this was something I wouldn’t be able to do again. I had completed 100km hiking challenges before diagnosis, but then bust my knee falling off a mountain in Scotland in 2015 and needed surgey. I was hoping to complete the South Coast 100km challenge (Eastbourne to Arundel) in 2016 as a knee rehab challenge and then pulled out due to diagnosis and to receive Lemtrada. Being able to complete the challenge in August 2018, on the 1st anniversary of completing my 2nd (and hopefully final) round of lemtrada was amazing. It was a hot day and it is a VERY hilly walk - but I managed to complete it in under 20 hours and raised over £3,000 for the MS Soc. I am so grateful to have been able to do this. (IX) Mountains I have climbed: Snowdon (twice - most recently with my mad father in law who decided he wanted to do it for his 80th birthday); Tryfan; Moll hebog; Ben Lomand (carrying my friends 7 yr old most of the way - my poor legs!); Ben Arthur (the Cobbler), Beinn Nairnain & Beinn Inme, a few Corbetts near Braemar, a whole gaggle of peaks in the Auvergne including Puys de Sancy, Puy de dome and Teton de Venus (the beatifically named boob of venus!)). Hopefully this summer I will hike the Tour de Mont Blanc. (X) Promotions at work - 1. I work full time in the City as a corporate legal adviser to a FTSE 100 financial institution. My career is important to me. When I was first diagnosed I was scared it would mean an immediate end to my career or, if it didn’t, that unconscious bias and prejudice would create a glass ceiling and stop me progressing. I was very nervous about telling my boss and my team about my diagnosis - but in the end decided I didn’t want to lie about why I needed time off for Lem. They were brilliant - compassionate and kind (and brought me Netflix vouchers to help with the boredom of being bed bound!). I was promoted to Director level last year - and am now helping champion a community of people with longer term health conditions / disabilities as part of my company’s inclusion agenda (XI) charities I’ve joined - 1. I’m a newly appointed Trustee of the MS Trust. I’ve drawn so much support from the information and people involved in the MS community I wanted to try and find a way to give back (beyond fundraising) (XII) Vit D/Omega 3/B12 vitamins taken - countless! So it has been a busy, active and happy few years since diagnosis. It is still early days for me - and I recognise that I could relapse or progress - but I’m hopeful that I’ve given myself the best possible chance of staying as happy and healthy as possible for as long as possible. MS is a shadow that is always with me, and I think about often (which is what brought me to the board today), but at the moment I feel the sun is high in the sky in my life and so it doesn’t cast too much shade on the things I love. I really hope that this post hasn’t come across as one long brag - I just wanted to follow up on my first posts above to help show those at the start of their journey, and scared about what a diagnosis could mean for their immediate future, that things can and hopefully will get better. I’m incredibly grateful for my health and well being in a way I never was before diagnosis - and recognise that I have been very lucky with my MS symptoms and access to prompt, aggressive DMDs and an MS team I trust.Good luck to everyone in limbo land, going through diagnosis or newly diagnosed. Stay strong and keep hope. xxx ** If you are keen to learn more about parkrun drop me a line or pop into the FB group below parkrun for people with multiple sclerosis | Facebook
Hello,
I’ve just come home from my annual MRI. Feels surreal that it is now 5 years since my diagnosis. Recognising that it is short span in the context of a lifelong disease, it both feels like yesterday and a lifetime ago since those terrifying initial steps into the world of MS. As with the post above, I thought I’d use my reflective mood to provide a short update on my progress. Whilst none of our journeys are the same, I remember all too well scouring these pages five years ago looking for a reason to hope!
Much of the update above remains true:
- Still no clinical relapses and the last MRI showed no new sub-clinical activity / lesions. Fingers crossed this latest scan shows the same (and hopefully further imrovement again)!!
-My original symtoms (numb toes, fuzzy left arm) remain largely in abeyance (huzzah!) - although my toes and fingers are increasingly sensitive to the cold and I notice my arm a little more if I am very tired or unwell.
-I’m still pretty lucky and don’t suffer too much from fatigue or cog-fog. The excpetion is at the wrong time of the month when I have 24 hours of being pretty exhausted and am an emotional liability! (but who knows if that’s hormones, MS, my age - or all of the above! (apologies if that’s TMI!!) (but even then I can manage my life/work as normal)
-
Post lemtrada monitoring continues (even in COVID!) - i’ve had a few slightly wobbly thyroid results (occoassionally fluctuating to just “under” and then recovering). I’m being monitored just in case but it doesn’t seem to be too much concern. More alarmingly I had a funny kidney function result at the end of last year. I felt fine, and seemed to recover to normal levels in a few days. I’ve been advised that it’s almost certainly nothing to worry about but have an appointment with a consultant in a few weeks to put my mind at reast.
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I’m still working full time as a Director of Legal for Corporate/ M&A at a FTSE 100 financial institution. I’m totally “out” at work. The job is pretty demanding (and recently it has been spectaculary hectic with 20 hour days/ 7 day weeks) but I’m still enjoying it and feel well supported by the team. WFH due to lockdown has definately made life easier though and I’ll be pushing to make sure I maintain this flexibility when we come out of lockdown.
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Still married! - and still running/gyming etc etc. I bust my knee skiing in Feb 20 so had to sit back a bit last year to focus on rehab, but am back to it now and, after completing a post lockdown fitness challenge at the end of last year (to try and undo the damage of entering lockdown on crutches and piling into all the beer/banana bread/cake I could scoff down!), my running is the strongest it’s ever been. My MS did play into treatment concerns for my knee injury (torn ACL, and injured PCL, MCL and meniscus - I did it properly!). Had it not been for COVID resulting in elective surgery cancellations I would have had reconstructuve surgery out of fear of a big relapse. Without an ACL I have to rely on muscle strength for additional stability. I was initially concerned that a prolonged relapse which leads to muscle atrophy could have me needing to do neuro rehab on a mechanically unstable joint. I’m still a bit worried about this, but I’ve made such a strong recovery on my knee from conservative rehab that Ive decided I can’t let fear of a relapse I may never have put me back.
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We moved house in Jan 21. My husband and I had only been together a couple of years when I was diagnosed and were living in seperate houses. He had just put his on the market to move in with me as a short interim step before buying together. I remember pleading with him to take his house off the market when I was going through diagnosis. I didn’t want him making any big decisions/life changes given all the uncertainties I was throwing into our lives and I was adamant he should leave me and find himself a better deal elsewhere. Like in so many things, he totally ignored me (and reader, I married him!). A year or so later we had an offer accepted on a house but then discovered a minor subsidence issue. Richard was minded to proceed but I was terrified of my MS taking a turn for the worse in a way which would force us to sell the house quickly which, if the markets were down at the time, could result in a significant loss due to the subsidence issue. (It was a remote old farmhouse split across 4 levels so I was worried I would really struggle if I had a major relapse). This time he listened to me and we pulled out. It took us another couple of years of house hunting to find anything that we liked as much - but patience was rewarded and we moved into our absolute dreamhouse this year. It’s in the middle of the Ashdown Forest, down a very silly lane and both the house and grounds will most likely be a nightmare if I have a major relapse but at this point I don’t care. My house is gorgeous and I am going to enjoy every minute of running around it and this beautiful forest (the original 100 Aker woods of winnie the pooh fame!) that I can. Again, I’ve decided not to let fear of a future relapse I may never have take away my enjoyment of the present.
So life continues to be happy, busy and active. My MS diagnosis has clearly burnt into my soul a little. I have allowed it, and fear of what may come, play a part in some major decisions in my life. As I’ve said above, it is a shadow that is always with me - but one I am trying to learn not to let steal things from me before they are due (and hoping that day never comes). I trying to learn to use it as a motivator to make the best choices in how I live my life, rather than as something which prevents me from doing things I love through fear or self imposed limitation.
As above, I really hope that this post hasn’t come across as one long brag - I just wanted to follow up on my first posts above to help show those at the start of their journey, and scared about what a diagnosis could mean for their immediate future, that things can and hopefully will get better. I’m incredibly grateful for my health and well being in a way I never was before diagnosis - and recognise that I have been very lucky with my MS symptoms and access to prompt, aggressive DMDs and an MS team I trust.Good luck to everyone in limbo land, going through diagnosis or newly diagnosed. Stay strong and keep hope. xxx
Great post Katy
I’m so glad life has been treating you well (apart from the knee - ouch). It’s fabulous to know that some people find Lemtrada to be the magic bullet it’s been for you.
Keep up the running. You’re Park Running for all of us who can’t even Park Walk!
It’s really so good to read such a positive post. It gives inspiration and hope for those people going through diagnosis now. I still wish I’d been allowed Campath (as Lemtrada was then known as) in 2002 when I first heard of it. It was such early days though, still experimental really. The bravery of people like you trusting your life and future wellbeing to an aggressive drug like Lemtrada are an example to us all.
Sue
I have been here literally for an hour, no diagnosis, but heading that way. Having read so many things about how awful all this is, it was a breath of fresh air to see how you are so positive and how much you are engaging with life. The future scares me so much as I am on my own completely, and I am terrified of becoming totally dependent on others. I am a teacher and the thought of losing that and my dancing (recreational ballet) or the ability to draw and paint fill me with dread. To see that you have been able to do so much gives me a little hope. Thank you.
Hello
It’s been a while since I posted and as I received my annual MRI results yesterday I thought I’d drop a quick update to this thread (the first I commented on when under going diagnosis) in case it is useful to anyone and helps provide hope.
The scan was all positive - no new lesions (active or otherwise), no other signs of progression and brain volume preserved. Huzzah!
Totally through the post Lemtrada gauntlet so no more blood tests. Hooray! And no side effects. Whilst the 5 years of monthly bloods gave a couple of odd Thyroid and kidney results all settled back to normal without needing any treatment.
I’ve had no relapses since last posting - and my few “old” symptoms (thankfully very mild) from time of diagnosis have been virtually silent - with two exceptions. I’m occasionally aware of them in the day or two before my period (a quirky addition to PMS - most people don’t feel it in their toes!!) or if I am unwell. I also had a 3 month pseaudo exacerbation of all the old symptoms. At the time I was going through a particularly stressful time at work (very very long hours, little to no sleep and juggling very many very fragile and extremely valuable plates). Whilst the flare up was going on I didn’t really have time to think about it - as I was so overwhelmed with work. But once I had a little head space I hated the fact that it had happened - and that I’d prioritised work so much over my well being. I’ve always loved my job and been proud of my career - but this prolonged and very stressful spell at work made me re-evaluate whether I still wanted to be doing it. I’m in the very fortunate position that work was a choice. My husband and I had been planning on retiring in the next couple of years anyway so I decided to take the plunge slightly early
- for the sake of my mental health as much as my MS management. Work were brilliant. They recognised the pressure I’d been under, and felt terrible about the pseudo flare (which I hadn’t told them about at the time), and were willing to try and find a way I’d be happy to stay in some capacity. But I’m an all or nothing person - and it felt like the right time to step away. Because of my reasons for doing this they protected my benefits, including my long term incentives/ deferred bonuses. And I was excited to leave and crack on with the next chapter in my life.
Two days after leaving work I picked up my puppy, Talbot. You’ll see from the very first comments on this thread YEARS ago I’d wanted a Hungarian Vizsla but didn’t think I could have one whilst working in the city. He’s now 18 months old and I absolutely LOVE him. I’m full time dog Mum and days are spent taking him for long walks and runs in the Ashdown Forest and training him (so far he’s done gundog, hoopers, scent, tracking ans mantrailing classes). He’s super high energy and basically made of mischief. We’re taking him to wales to climb his first mountains in spring.
I’m probably the fittest and strongest I’ve ever been. Since giving up work I’ve really focussed on my well being again and do Hybrid Bootcamp classes 5 x a week, as well as running. I’ve hit PBs in my lifts (in case of interest, 115kg deadlift, 75kg squat, 52.5kg bench) and I’m running my first half marathon on March. In November a friend and I competed in Hyrox ladies doubles (a hybrid fitness competition) at the ExCel and we are hoping to beat our time at Olympia in November and in June I’m doing the UK 3 Peaks with a girlfriend.
I remember too well trawling these pages when first diagnosed desperate to understand what this disease meant - and being so grateful to others who’s story I could track and that showed whilst this disease means we may need to pivot, life still goes on and can be wonderful.
I know that I’m very fortunate with my disease and its management, and that my story isn’t everyone’s, but hope this might be helpful to some.
I’m always happy to chat. DM me if you want to talk.
Until next time, take care
Brilliant to hear such a positive update. So glad you’re able to take these steps and get such a good result.
Keep enjoying the good stuff
Mick
Hi Katy,
Thank you for sharing. I have just been diagnosed based on 2 MRIs a year apart that have shown some new lesions. The only symptom I have atm is tingling in my left arm. Did you have any side effects with the Lemtrada? Thanks
My goodness, I am so happy to read this. The secret is to make the best of the hand you’ve been dealt, with clear-eyed realism, and I remember liking your style on that front from the start. It’s great to hear that you’ve made some tough but correct decisions on the job front. Brava.
Oww! Good for you! It’s wonderful to learn that you’ve made some challenging yet wise choices regarding your career.
@shay1 - this is the longer thread referred to in my reply
Forgot about the half marathon. Managed 2:05: 02 - which I was bloody delighted with as very much not a runner! 
That’s brilliant well done , I’m glad you doing so well it’s good to hear some positivity
See you went on a high dmt from start, I’m still trying to do this as only been offered medium dmt due to an old crohns flare from years ago (peeps on here prob fed up of me mentioning it 
) but I do believe ms needs to be hit hard from as early as possible
Thanks again for such a happy update 
Katy is star poster-child for hitting MS hard first and asking questions later if at all. 
Brava, Katy! I wish that 25 years ago I had been a bit more like her, but to be fair there wasn’t much on the menu back then in terms of DMDs, and I was lucky enough even to get Avonex. But I was too slow to switch up to Tysabri when it did become available, so I’m afraid I’m a bit of a cautionary tale on that one. Water under the bridge, but it’s why I’m always banging on about not languishing longer than you must on low-efficacy drugs if they aren’t getting the job done. Or, (even better, and like Katy) don’t even give them a chance to not work - just reach for the hard stuff from day 1 and don’t mess about. I know that’s what you’re trying to do, shay, and I wish that things were easier.
Hi Alison
I haven’t given up yet , seen private gastro on Tuesday who is writing a letter of support for me as believes I’m right in asking for tysrabi from the start to deal with both issues he’s also emailing my go and neuro I seen go yesterday who also agrees and she’s also writing a letter of support, uk are to far behind the likes of the us in their administration of high DMTs from start one day we will get there but I want that one day to be now for me , I’ll update when I’ve done the email next week 
Good work. I’m keeping fingers crossed for you.
Thanks Alison. The boards were so helpful to me in those first few months but I very rarely remember to check in these days. It’s so brilliant that there are more thoughtful regular posters like you still helping everyone through those tough first stages. Hope you are keeping well. X
I think I was incredibly lucky - both to land with a neuro who understood my choice to want to hit the MS hard and fast and to have Lemtrada available as a first DMD (and then again to have such a smooth ride through treatment given the potential side effects). I’m a bit out of the loop on the latest/ most effective drugs now - but my advice would be to treat every neurological meeting like a business meeting. I war gamed each session and went in with my objectives clearly written out in my notebook, along with a list of questions that I wanted answering - and made sure my husband had these too so if I got diverted in the discussions I had back up to make sure I got what I wanted out of each session. I also summed up at the end of each meeting with what had been agreed and how was responsible for what follow on actions (and followed this up with an email). I think my poor neuro probably thought I was a nightmare - but took it in good humour and told my husband I was terrifyingly efficient!
In short - you are your own best advocate. Don’t be afraid to be pushy. Good luck x
Hi katy
I’m trying everything to get on a better dmt , I had a phone call yesterday telling me my tecfidera is going to be sent out to me next Tuesday, I going to try as need to start a dmt asap but it’s not the one I want as it’s mid efficiency, backstory also have crohns so they won’t give me anti cd20 med (said I would have been offered ocrevus) @Leonora has been massively helpful also @Hank_Dogs & @alison100
I have seen a gastro who agrees tysabri would be a better treatment and has wrote a letter of support and gp also on board, apparently I’m out of the criteria for tysabri as need more relapses 
, I have an aunt with ms she had a bad relapse 25 years ago and has been using a wheelchair since , I’m terrified this is going to happen to me , I have 3 daughters and a mortgage it would be devastating , think I’m going to mention everything in email to neuro attach letter from gastro and mention impact it’s having on my mental health, if tysrabi is off the table gastro supports use of anti cd20 with close monitoring by gastro team so can’t understand why they saying no , there has been a patient who had part of her bowel removed while on ocrevus due to a colitis flare I think that’s stopping them , understandable as that’s a terrible thing to happen but there’s no guarantee it will happen to myself especially with gastro checks, Alison wisely said shoot the shark nearest the boat that’s ms for me , sorry long post and apologies to the people on here fed up of me whinging
, your posts are great for people newly diagnosed keep the updates up
Thanks
Hi Shay1. On a slightly different line I think my advice is:
Yes definitely start on a DMT as soon as you can.
Please don’t get too anxious . I do believe that stress and anxiety is pretty bad for MS
Like you , I had an aunt who had MS and she went downhill steadily. But - that was in the days when there were no DMTs at all and when the general view was one of ‘rest and don’t exercise’.
Like you , when I was diagnosed I saw myself following my Aunt’s path . However! I was put on one of the few (possibly 2-3) DMTs available at that time I.e Avonex which is now just one of many DMTs and , in comparison with the newer ones, seems to be the least effective.
18-19 years later and at age 70, I am still mobile. Although I struggle to walk continuously for much more than 10-12 mins I still do e.g my share of all the housework , gardening and stuff. So far as I know my mind is OK ( occasionally forget where Ive put something 
but my 66 year old wife is much worse at that 
)
In addition to Avonex, I follow general advice on diet and exercise, in particular the general guidance from Overcoming MS which you can find as a website or book.
Prepared by an Australian professor of medicine who has MS himself it’s a good resource on all things MS including diet , exercise etc and, in my mind very useful stuff on Meditation, mindfulness, relaxation. Basically all things to maintain a healthy calm brain free, as far as possible, from stress and anxiety and anything that fires up our slightly wonky immune systems
So, with apologies if this sounds like I’m trivialising things, Keep Calm and Carry on, take care of yourself, enjoy the things that are important to you and ‘Live Long and Prosper’
Cheers Hank
Trekkie fan by any chance?
I have looked at that website found it a bit confusing to work my way around also some things seemed to good to be true
I’ll revisit and check it out again, I’m a big of a overthinker and and don’t like being out of control
hi Shay, this is just general chat.
I remember when I was first diagnosed I found it impossible not to overthink things. My mind and emotions were rushing all over the place and my (now) wife reminds me that, yes I saw myself in a wheelchair within a few years. It was a dark frightening and confusing time!
Somehow or another and over the next few years the darkness gave way to a brighter outlook. There was a process of ‘grieving’ for a lost future but also slow coming to terms with a new ‘normal’. And that new normal isn’t too bad at all.
I carried on working for a few years until fortunately my employer wanted to reduce staff numbers and came up with a generous package which I and others took very happily .
A couple of years later my then girlfriend and I got married. Celebrated our 10th this year. We do all the usual normal stuff in life.
For years MS didn’t really affect me. Can’t remember exactly when but not so many years ago I was replacing ridge tiles on the roof of our bungalow and also did a complete refit of our bathroom (radiator, bath /shower , toilet etc). Don’t think I could do all that now but I still enjoy life. Hot weather is a bit of a struggle but living in Scotland that’s not a usual problem.
I do worry about the future and the possibility of future decline, disability etc and I do make ‘contingency plans’ for such things but I guess that must be an unavoidable aspect of life for all of us with MS.
Not really a Trekie as such but it is good and has given us sayings like Live Long and …………, It’s Life Jim but not as we know it .