Last reply 1 year ago
Diagnosis with no relapses

I was diagnosed a few months and was very fortunate to be offered Lemtrada.

I had my first attack two years ago which came out of the blue. The right side of my body was affected, I couldn’t move my arm, that side of my face, my leg was a bit wonky and my speech was very slurred and I also had a seizure. It really shocked me, although looking back ignoring the increasing numbness in my hands and face and the headaches probably wasn’t the best idea! Since then I have been pretty good, when I’m tired my hand gets a bit shakey, my speech is a little slurry and generally I’m a bit more forgetful (that thing, you know the thing that does that thing!) and oh, and I’m always tired! But thankfully, no relapses.

I found the last two years difficult, I’m a teacher and so am constantly on my feet and working silly hours, but I get through it. Emotionally it took quite a toll, I spent a long time trying to get over what happened. The consultant mentioned at the time that it could be MS but after so long I finally found some peace with what has happened, trying to tell myself that it was over. However, the latest MRI revealed a number of new lesions and I was diagnosed.

What I would be so interested to hear is other people experiences of being diagnosed after one attack and how they have dealt with it. I am so lucky to have had the opportunity to have Lemtrara (2 months post infusion and doing well, just tired) but I still feel like I am trying to make sense of it all!

Thanks 🙂 x

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anxious123
1 year ago

@petal87 i am currently in limbo having had a suspected first attack and an mri showing brain and spine lesions …i think i will be diagnosed at next scan. Just wondered was lemtrada the first treatment offered as i thought you had to try others first? Also how long did you take off work? Do you have spine and brain lesions when you had first attack?


katy79
1 year ago

@petal87

I’ve only had one clear episode and received R1 lem last August. Ive summarised my story below.

Late February 2016 the toes on my left foot went numb. I thought my toes had become too cold wearing ballet pumps on a train platform – but thought it odd they stayed numb after I was in the warm – so I then blamed it on new high heels which pinched. Two days later I noticed my perineum felt numb – and put this down to an ill adjusted seat in spin. My boyfriend thought I’d pinched a sciatic nerve and so rather than going to the gym I googled stretches. Dr Google kindly suspected something called Caude Equine – a reasonably terrifying medical emergency where your spinal column pinches and destroys the spinal chord. I told Dr Google he was an idiot and went to Body Pump and curling (where I spent much of the time falling on my arse on the ice). The next day the toes on my right foot went numb and I went to the Drs who sent me to A&E for an MRI to rule out Caude Equina. I was told that my spinal column was good and strong – but that I had two t2 hyperintensities suggestive of demylination”. One week, a referral to a private neuro and a full CNS MRI and I was told I “very probably had MS” – which was confirmed a week later on further referral to an MS specialist.

By this stage the numbness in my perenium had gone. The numbness in my toes cleared up within a month after a week of steroid tablets.

To say the diagnosis came out of the blue was a massive understatement. I felt so fit and well. Even when my numb toes were at their worst they were never painful and I was still able to go on 20+mile hikes without a second thought. In the lead up to the diagnosis I did all the mental plea bargaining, hoping and praying that it was just a B12 deficiency or similar imaginable. When the diagnosis landed I felt like the bottom of my world fell out.

And then I found this site, read David’s Campath journey and @tracyd‘s more recent experiences and set my resolve for battle. I was transferred onto the NHS for treatment and had a second MRI to confirm the “active” RRMS diagnosis. It turns out that my default mode when under stress is “project manager” – possibly something drummed into me after years as a corporate lawyer. I read everything (sensible) that I could and attended every neuro and MS meeting with a crib sheet of questions and dropped my team follow up emails after each appointment detailing responsibility for agreed actions and timeframes. My neuro told my boyfriend I was frighteningly efficient. I decided this was a compliment!

In terms of lifestyle choices, I’ve not changed much. I take vitamin D (don’t we all?), omega 3, Iron and B12. I’ve tweaked my diet to include more of the good and less of the bad (so you are more likely to get a BBQ sardine than a sausage at my house this summer – but treats are still allowed) – and I’m experimenting with cutting out gluten (as I think I have a sluggish gut post lem)). I exercised a lot before diagnosis but I’ve slightly tweaked this to include more cardio and core strength (and boxing!!! – cardio, cognitive reflex and anger management!!). I’m ironically stronger, fitter and faster than pre-diagnosis. Every PB feels like a punch in the face to my MS. I’m more conscious of sleeping properly (but still find myself up past bedtime on the odd Netflix binge). I still drink more than I should (but am a complete larry light weight post lem – sniff of a wine gum and I’m on the floor which is very disappointing!)

I’ve told work about what is going on but not had to ask for any adjustments. My boss, team that report to me and my clients have all been excellent. It is nice not to have to come up with a cover story for why I wear a medical aid bracelet or have a monthly trip to Kings College for my bloods (or why I needed time off for treatment). One concession I have made very recently is to turn down the opportunity to do a work sponsored two year MBA. I decided this wasn’t a commitment to be taken lightly – and I didn’t want to spread myself too thin whilst I’m going through R2. This is not something I would have turned down before – but I think was the right decision on this occasion and have been told by work it wasn’t a one time offer which is nice

I’m getting married in May 18 (hooray!!) – and i’m hoping I’ll be well and recovered from R2 by then and able to get he jabs etc I need for honeymoon (hopefully Namibia) at that stage

We are house hunting for our “forever” home – and are not looking at bungalows. For now we want our dream house – and I’m optimistic we’ll be able to live there a long while. If mobility becomes an issue we’ll cross that bridge (possibly on a scooter) when we come to it.

We still have no idea whether we want children. Given I’m 37 and he’s 46 we should probably make our minds up soon. This indecision has nothing to do with MS – but at least Lem clears the way for me to conceive once treated.

I’ve had no further MS relapses post the numb toes. When I am tired or unwell (or my period is due) I get odd rumblings – numb toes for a few hours or a feel as though I have an elastic band around my arm. Some times I particularly enthusiastic exercise class came make my toes go numb for 20 mins or so. But that is it (for which I am very grateful)

So I think of my MS as a shadow that is always with me – and there is not a day I do not think about it – but at the moment the sun is high in the sky and it casts no real shadow on my life. I’m wary of the day that the sun may start to set – but am hopeful that Lem and lifestyle adjustments mean that is a long time off (and that that the clever scientists will have come out with a silver bullet by then).

Apologies – I’ve rambled on for an age. Today is one of those days MS is more on my mind – it was on the BBC this morning, and I have an appointment with my nurse this week to set R2 (and a scan next month to re-baseline me ahead of then and see what silent damage has occurred over the last year) – so I’m clearly still trying to make sense of it too – but think I am in a pretty good place.

Very happy to chat if it helps. K x


tracyd
1 year ago

@petal87
My diagnosis came on the back of no known relapses at all. I ended up in hospital after something went ‘pop’ in my head They suspected that I’d had a brain haemoraghe but when they saw shadows on my brain they started talking about tumours and strokes – all pretty terrifying – by the time they told me I’d had a bout of viral meningitis (antibiotics) and had a large inflammation in my brain above my right eye (steroids) oh and by the way you’ve probably got MS …. it was all rather a relief if I’m honest.

Between diagnosis and round 1 of Lemtrada I did have relapses but the decision was already made and when you know what you’re looking for it’s easy to recognise what I would under normal circumstances have put down to being in my 40’s / being overweight / not getting enough sleep and generally being a stressed out lazy arse.

Life is ‘normal’ again now, (10 days time I will be 1 year post round 2)
The sensory disruption that meant I had no feeling to 75% of my body has gone, the terrifying bathroom urge also gone, footdrop and collapsing legs gone, the brain fog gone …..
I still get tired but it doesn’t stop me doing anything …. I just have to plan for something I know is going to be strenuous properly like a day on my feet buying copious amounts of stuff walking miles round the NEC in Birmingham 😂😂

You have a friend request, if you want someone to talk to / put the world to rights or just have a good whinge to I’m happy to share contact details by PM


petal87
1 year ago

@anxious123 @katy79 @traceyd

Thank you all for taking the time to respond! It means a huge amount – I’m still feeling rather lost with it all and to have a source of support and understanding is brilliant. So much of this resonates with me.

I want to take the time to respond properly – but I am exhausted! I will send a proper response tomorrow (and had a couple of questions if you don’t mind!) but just wanted to say thanks x


petal87
1 year ago

oops, @tracyd


petal87
1 year ago

Hi @anxious123 sorry its taken so long for a response, difficult week! I was offered Lemtrara as a first treatment but was also given the option of copaxone and others. I decided to go for Lem as I wanted to hit it hard first time. I had 4 weeks off in total. I defiantly needed more than the week after. I first week I felt ok, but had terrible headaches and fatigue on the third week. Feeling much better, just tired. Doing part time at work for a little bit which is really helping. Hope all goes well at your next appointment, its such a difficult time. Please feel free to send a message etc x

@katy79 thanks so much for your message, Its really great to be able to discuss it. Congrats on your wedding! I hope you have a wonderful day. I am so impressed with your positivity! As someone who is (or was?!) an optimist, its really knocked me. I’m still really struggling with it. At the moment no amount of telling myself how well I’m doing or how effective Lemtrada is can make me feel positive. I think this is just something I need to work though and it will take time. Before all of this I was very active ,doing lot of exercise, out with friends all the time and balancing lots of stuff at work. I have had to slow down a lot and I’ve not quite got myself back on track. I’m turning 30 in a few weeks and before the diagnosis we were planning/trying for a baby but have had to put that on hold – Ive found this difficult, it feels like a another aspect of my life being dictated by MS. I’m now just fed up of being fed up and need to find a way though it! Did you find you were particularly fatigued from the Lem and how long did it last? Sorry for the ramble! X

@tracyd Again it great to hear your positivity and experience – thanks for sharing. It sounds like Lem had a big impact on your symptoms, how long did this take? Also how did you feel doing the second round compared to the first, are you more used to it? Did it take you long to recover? Questions questions! x


tracyd
1 year ago

@petal87
Round 2 was easier than round 1 for me, I drove myself down to Southampton myself and drove back home 3 days later.
I was in good shape going into both rounds so it wasn’t difficult having either round and I was back to work immediately after them both (I worked from hospital during the infusions too)

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