Last reply 2 years ago
After 10 years of maybes it's finally of

I am a total newbie and this is my first post.
I started having episodes of unwellness -extreme fatigue, numbness in my legs and arms etc when I was 16 And was diagnosed with Chronic fatigue (ME). The diagnosis always felt like a cop out because they didn’t really know what was wrong. I was diagnosed with MS in 2006 after a bad relapse while studying abroad, and a positive reaction to steroid treatment but when I came back to the UK they “could not confirm the diagnosis!” 10 years on, netous relapses, a husband and 2 kids later I am now 32 and finally have a confirmed MS diagnosis. I am going to the MS clinic for the first time on 8th Feb. What do I need to know or ask about? What is the best DMT to start with? Any advice would be awesome ?

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2 years ago

Hi @f10na and welcome.

A journey to a diagnosis of MS can take some strange turns over a number of years, but eventually, it makes sense of all the symptoms you have experienced.

And, now you are starting your journey into the world of Disease Modifying Treatments (DMTs), where there are now a range of options, from oral, through injectables to infusions.

Have a look at the publications available here under “treatments”, so that you understand the different options. Then you can take an active role in conversations with your medical people, rather than be told what you’re having.

A new philosophy is starting to appear in the medical community, to hit MS hard and fast with an appropriate DMT. Although others are still adopting a conservative approach. So, do build up your own argument for the treatment you want.

2 years ago

Hi Fiona
(saw what you did with the name – nice)

I say ditto to everything you posted, I am also newbie, late diagnosis (I only had a bad sinus infection apparently) finally MS spotted, spent years reading & attempting self help, which probably a really bad idea, I’m skirting around the at an agressive treatment, of rebooting the imune system, the problem I have is the clinic appears not tht bothered with me as eyesight not limbs are my main visible symptoms.

The positive I have now is I managde the leap to join sites like this & stop taking MS on alone,
Thank you for inspiring my first comment on her, Chin up


2 years ago

Hi Fiona,

Sounds like you’ve already been on a journey getting to this point.

When you go to your appointment, ask who your MS Nurse is as he/she will be a first point contact for you for questions you have and will help with the DMDs you do go on.

Write down any question you have about your MS and ask them at your appointment no matter has crazy it may sound.

Good luck at your appointment.

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