suemsspouse 15/01/15
Last reply 3 years ago
Lemtrada experience

My husband was diagnosed over 20 years ago with rrms but over the last year he has progressed fast and is having terrible trouble walking. He also has terrible leg spasms and takes medication for it but sometimes even the maximum dose doesn’t help. He is hoping to start Lemtrada very soon. We are just awaiting approval. I have never joined a support group before because before the past year his MS didn’t change our life too much. I now feel very depressed and so afraid for our future. I have children and I don’t really talk to anyone about this because he doesn’t want anyone to know he has MS for fear it will effect his career which I totally understand. I would like to know if there is anyone out there in a similar situation that has had positive results with Lemtrada.

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stumbler
3 years ago

@suemsspouse , it’s good of you to join us, to support your husband.

Lemtrada, also known as Alemtuzumab, and once known as Campath, has been the subject of a lot of discussion recently. You can search out these discussions by using the forum search facility (the magnifying glass, top left) and entering Lemtrada as your search term.

@us-emma has had first hand experience and will share her experiences. Her experiences are also shared here :- http://lemtrada.blogspot.co.uk/ 😉


cameron
3 years ago

If you follow the Barts MS Research blog, there’s a lot of really positive comments about Alemtuzamab. The general view seems to be that it’s a great pity all MSers can’t be put on it straight away! xx


judy-gy
3 years ago

I had great difficulty walking but made great progress / recovery with phisio. Jx


us-emma
3 years ago

Never give up hope.

I am sorry to hear you don’t have any social support. MS is hard enough but not being able to talk with anyone about the daily-ness of it all is extra rough.

In the US MS is considered protected under The Americans with Disability statute. This means you have legal right about not only protection of your jobs, but also the right to request alterations to your working environment to accommodate your disability. I am sure it is similar in other countries.

I actually felt More secure about my job after I told my employers about MS because they couldn’t fire me. Sadly I had to leave several jobs due to MS symptoms that couldn’t be ‘accommodated’ like memory loss, my own concerns with making a critical mistake. But knowing you have rights is empowering.

I now work in a totally different field from the one I trained for and I work from home- both are great accommodations to this disease.

My wish for you is that you can find some support among your friends & family.

Take care,
Emma

Ps I am the same Emma who took Lemtrada in April 2014. The blog stumbler cited has more info on my experience with Lem. In the US the address is Lemtrada.blogspot.com


stumbler
3 years ago

@suemsspouse, @us-emma is quite correct about there being some job protection being available.

In the UK, the protection is afforded under the Equalities Act 2010. The following publication covers work issues :- http://www.mstrust.org.uk/shop/product.jsp?prodid=246 😉


suemsspouse
3 years ago

We got a letter from Coventry insurance denying coverage. They think it’s experimental and investigational. I am so upset. He has already done the lab work. He seems to be getting worse everyday. Does anyone know what insurance plans will actually pay for this treatment. His physician and the MS One to One program say he meets all the requirements to receive Lemtrada.

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