molineux1047 13/05/17
Last reply 9 months ago
DMD options in the West Midlands

Hi, I was diagnosed with RRMS in April 2017 after suffering vertigo suddenly in June 2016. In February this year I developed double vision and as a result of 2 subsequent MRI scans i was first told I had lesions on my brain, then the second scan with contrast showed new active lesions on my brain.

15 years ago one of my eyes was paralysed slightly and i think that was the first sign of MS but i fully recovered.

Since my recent diagnosis Ive had numbness in the right side of my waist, numb tips of my left fingers and today my knee was numb to the touch and felt heavy. Ive also had awful shooting pains in my back/stomach a few times recently.

I work full time, have a 5 year old daughter, go to the gym often but since diagnosis ive been struggling to work – I wonder if some of it is just upset at the diagnosis but these new symptoms suggest it may be more than that.

Anyway, my question is, ive been referred to see a consultant in Birmingham to discuss DMDs but been told the appt will take more than 26 weeks. Im now hoping to see him privately.

Can anyone advise me what DMD they may let me have? I was sort of hoping for Tecfidera but reading about Lemtrada im wondering if they may let me have that – can I have any say in what Im allowed to have?

My neurlogist basically says I have active RRMS with 2 recent relapses, new lesions and current symptoms. Luckily, I have no disabilty at the moment bu I am struggling with pain, fatigue and altered sensation. I have 10mg nortriptyline for the pain.

It’s all very daunting as Im sure you all know, and reading the advice on here I thought I should ask a question rather than trawl the internet and worry myself more. Please be gentle with me 🙂

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tracyd
9 months ago

Personally when I was diagnosed I went to war – screw this ms nonsense I wanted it flattened in a corner crying for its mummy.

I didn’t wait to be offered what I wanted I told them and fought for it. As a newly diagnosed my choice was Lemtrada to stop it in its tracks. I am mow 2 years post treatment and my ms is inactive no new lesions no activity. I would do this Every year for the rest of my life if that was what it would take to keep this MS shit in its box xxxx


tracyd
9 months ago

Where you are this is available at the QE


molineux1047
9 months ago

My doctor’s is in Wolverhampton but I currently live in Codsall, Staffs. I’ve read alot of what you’ve written @tracyd and it’s very inspiring. Thank you x


molineux1047
9 months ago

@tracyd I’m just reading your story – I can understand what you mean about the ‘soup head’. I have an oxygen chamber near me – I may see if I can use it.

My biggest concern has been the double vision ive had. Its interesting to read about your ‘pseudo symptoms’ and realise that even with Lemtrada you still need to pace yourself. Alot of what Ive read seems to suggest its a wonder drug that makes you forget MS even existed in your life – I suppose I need to get my head round that.

Thanks, Mark


tracyd
9 months ago

@molineux1047
Lemtrada is a victim of its own success to a certain degree. It never promised the help people improve only to stop the progression.

So many of us have improved (including me) that it is expected and we seem to expect that when it’s done we will revert to how we were when we were in our teens.

I can see properly again, I can walk unaided, I have normal sensation and am not in the brink of soiling myself several times a day.

5k or more of walking will tire me so much that I have a few days of pseudo symptoms – it’s like the clock has been turned back 2 years – it’s truely awful – and that used to be all my ‘normal’ all day every day …..

I’m not teenage me all over again, I’m 45 year old me who’s a bit fat, quite lazy who likes wine and hasn’t quit smoking yet …..

that’s ‘normal’ enough for me ❤️❤️❤️


sandwich
9 months ago

You are local to me 🙂

I had Lemtrada the same time of Tracy and touch wood I’ve not progressed since which is the best news I can ask for. I have no day to day symptoms or disability but didn’t before so cant really comment on that. I go to Stoke Hospital and have found them to be very good.


molineux1047
9 months ago

@sandwich was it relatively easy for you to get Lemtrada? I didnt have any symptoms before but have had for the last year. Im just reading about Lemtrada now and have my consultant appt next Thursday now


sandwich
9 months ago

Yes it was. I imagine given they have already defined your ms as active you should be ok, plus you have a recent MRI confirming activity.


molineux1047
9 months ago

Thanks @sandwich thats really helpful. Its a pretty nerve wracking time isnt it


molineux1047
9 months ago

@sandwich @tracyd I know this may vary quite widely but from your experience/knowledge how long may it take from a consultant giving the ok for a DMD to treatment starting?


tracyd
9 months ago

Agreed it with my neuro in January approved in March by the health authority treated in May


molineux1047
9 months ago

Thanks @tracyd


sandwich
9 months ago

It took around 3 months to start mine however at the time the treatment had only recently been approved and it took time to get the resources together. It does vary though and bed space can be a problem. Facebook have a UK Lemtrada page and there are lots of personal stories on there.

Good luck at your appointment. I had my annual check up today and the neuro confirmed no change re EDS score which is good news. No third round is needed for me as it stands. They are pleased with the overall response from the Lemtrada cohort to date and from talking to them today they are very pro treatment for the newly diagnosed. Times have really changed since I was diagnosed and in a good way. There is a real shift to treat now.


molineux1047
9 months ago

@sandwich I really appreciate your reply. It’s really reassuring. Thank you

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