Last reply 4 years ago
Lemtrada

Hi all

Hope your all ok

I am waiting for Lemtrada to be started, lucky to have been offered it but been waiting months for treatment to start, contacted dr and his secretary says he still waiting to have business meeting about it and they won’t let me back to work till it’s been done, so frustrating as I want to go back to work. Sorry to moan 🙂 anyway was just wondering if anyone else has had Lemtrada and how did you get on? I still have pins and needles in my left side and pain in left arm, I can live with it but would be nice if it would go

Let me know your experiences, thank you 🙂 xx

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stumbler
4 years ago

@hannah015 , have a read through this discussion, which provides some good information and some links :-

https://shift.ms/topic/lemtrada-treatment-anyone-tryed-it/

The fact that you’ve been waiting months is a concern. The NICE Guidelines for Lemtrada (https://www.nice.org.uk/guidance/ta312) suggest it should be available 3 months from their guidance, which was dated May, so you may consider that you’re already 3 months late.

If it’s also preventing your return to work, I don’t see why you should have to put your life on hold, whilst you’re waiting for the bureaucrats, bean-counters and pen-pushers.

See if you can put some pressure on them by quoting the NICE guidelines….


hannah015
4 years ago

That’s brill thanks @stumbler, going to call pals at QE hospital and tell them how long I have been waiting, hopefully it will speed it up, just want to get back to work and driving but he still hasn’t completed forms for Dvla. So annoying being in limbo waiting. Thanks for your help as always your a star 🙂


stumbler
4 years ago

@hannah015 , I don’t think you have to stop driving because of the diagnosis.

The DVLA are just seeking confirmation of your ability to drive, so your licence is still valid whilst this appraisal process is completed.

Obviously, don’t drive if you feel that you would be a danger.

You could check with the DVLA (0300 790 6806) and see what they say. 😉


hannah015
4 years ago

I need to change my car for an automatic because I can’t hold the biting point on my manual after my relapse. My left leg continually shakes when trying to hold clutch. I have been waiting for specialist to complete form for Dvla but he is taking ages. Do you think I would be ok to change car anyway? I didn’t want to go ahead until I had confirmation he would allow me to drive as my boyfriend is driving me about in mine at moment, what do you think @stumbler


stumbler
4 years ago

@hannah015 , I’d pose the question direct to the DVLA as I’m definitely not the right person to ask.

So far, in my MS driving career, I’ve switched from a manual to an automatic, for the same reasons you mention. But, I’ve gone further, I’ve now switched my automatic for a car with hand controls!!

I’ve made these changes as I’ve needed to, when my driving gave me cause for concern. I’ve not notified the DVLA, but my 3 year licence has to be re-newed next year!

They’ll probably be round to lock me up soon…..lol 😆


hannah015
4 years ago

Lol can I have your car when your locked up 😉

I will phone them tomorrow thank you, I would be ok driving manual if it wasn’t for the shaky leg when I try to hold clutch for a while, that’s why I thought best get an automatic, been waiting for forms to go back, have started shopping for car now so hopefully be in my mx5 soon, can’t wait 🙂


us-emma
4 years ago

@hannah015,

I agree with @stumbler in not waiting and being the squeeky wheel. I hope you got results with your inquiry. Very strange they would say you can’t work if you believe you can!

I had Lem in April and blogged about it (Lemtrada.blogspot.con). It has made a huge difference in my life after 11 years diagnosed I am getting back to ‘normal’. If you have any specific questions about treatment I am happy to help.

The reason you leg shakes is that the nerve pathway from brain to leg is damaged (very common to happen in lower extremities first, but can happen anywhere). When your brain tries to send a continuous signal to hold the clutch the signal over time ‘deteriorates’ hence the jumping.

I had this in arms & legs but 7 months post-Lemtrada I have none of this. The thinking is that when you give your body a break from continuous onslaught of its own immune system natural repairitive processes can take place. I must say I am surprised it worked so well in me (due to long time diagnosed) but it did.

Best of luck to you in your battle against this beast!


hannah015
4 years ago

Hi @us-emma

That’s a great help, I actually came across your blog the other day and found it really interesting thank you. I think it could definitely help with my leg having Lemtrada so looking forward to having it. I can live with the problems I have left over from relapse, but bonus if they go 🙂 yeah I find it odd they won’t let me back to work. I spoke to my gp the other day who said they will reconsider after a meeting in January. I’m stubborn so I will convince them 🙂 I have decided to go to college to start my aat accountancy, and will work part time alongside it. Very excited. Ms has taught me a great lesson, before my attack I wasn’t motivated enough but it has pushed me to do more with my life and appreciate things I do have rather than worry About the little things. I mean we could be a lot worse off. Thanks for your help Hun

Xx

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