Anonymous 24/02/15
Last reply 3 years ago
Postive neuro post!

Ok so I got my official diagnosis today. Not good but not unexpected.
Good news is I’ve been offered all of the DMTs and I’ve chose Lemtrada.
I’m on Rebif at the moment and while I have no symptoms or disability at the moment I want to treat hard and early.

He let me harp on about NEDA and window’s of opportunities and agreed to support me in whichever DMT I choose. He has given me back some hope. This is the third neuro I’ve been through and this guy is totally on the level and gets it!

So glad I went for a second then third opinion!

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3 years ago

Great news, please keep us informed of your progress and the steps that happen 🙂

3 years ago

Thank you.
I was worried that I would not be offered anything stronger as while my MRI showed a new lesion I have no disability. I’m really over the moon my neuro is so proactive. Being listened to and heard makes the difference.

As you, there is a waiting list as Lemtrada is not ready in my trust. Likely a couple of months. Its resources around the monitoring which is a problem apparently. The contact at NHS England is happy to look into the problem as I know its not just my trust which is struggling.

3 years ago


So glad to hear your preserverance paid off! Finding the right neuro is key!

Start working now on catching up on any vaccinations you night need (chicken pox, tetanus, etc) also do the required protesting to get that out of the way- HIV, HEP C, TB among others.

If you do work, catch up on any lagging projects and make plans for the time off.

Have you seen the blog pages on getting ready for Lem & considering your protocol? I can repost them here if you need them.

In the mean time stay away from sick people, hospitals, clinics, day cares- you don’t want to catch anything just prior to Lem that might further push back your start date.

I hope your Lem week comes sooner rather than later 🙂


3 years ago

@us-emma, Thank you I have looked at your blog and found it really helpful.
Just waiting now. I’ve contacted the trust and may utilise the local elections coming up in response to the “we want your views” mail coming through my door at the moment. Time is brain and all that.

Feel very fortunate to be getting the treatment.

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