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The Elephant In The Room

Good morning everyone,

I had my appointment yesterday with the consultant, and had my diagnosis confirmed, RRMS.

Now what do I do???

you should have been introduced to your ms nurse.

then had a discussion on Disease Modifying Drugs.

maybe ring the neuro’s secretary and ask about these.

also keep coming on this site and Everyday Living as well because you learn more from people who are going through the same stuff.

stay strong, you’ll be alright.

Hi CatwomanCarole58,

thanks for your reply, I was told yesterday that the MS nurse would be in touch soon and to expect an appointment in 4-6 weeks, and he gave me a list of drugs to research so when I see the nurse I would be better informed. But it’s all just %#^$!

I appreciate I am not the only one, but it damn well feels like it.

I will acquaint myself with the informative bunch on here, and perhaps I may be able to contribute something useful in the future?

Thanks.

Hello

Try reading some of the subjects on the About MS tag at the top of this page. Particularly the advice footprint the newly diagnosed.

In terms of researching disease modifying drugs (DMDs) have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid You won’t have all these drugs to choose from, typically the neurologist would recommend a couple and give you some choice, so it helps to know more about your options.

When you’re looking for information about MS, try to stick to the MSS and the MS Trust. They are reliable sources.

If you have specific questions, random thoughts, just need some moral support, come back to us here. We’ll do our best to help.

Welcome to the gang you never wanted to join.

Sue

Hello Ssssue,

the consultant gave me a list of 6 types to research, but I’m still a bit vague as his handwriting is worse than mine! I think I will have my work cut out trying to decide which one could be for me. I expect I will have a few (lots) more questions.

thanks.

Hi,

The following disease modifying drugs have been approved for use by the NHS in the UK. The availability of each drug may vary in England, Scotland, Wales and Northern Ireland.

  • Aubagio (teriflunomide)
  • Avonex (interferon beta 1a)
  • Betaferon (interferon beta 1b)
  • Brabio (glatiramer acetate)
  • Copaxone (glatiramer acetate)
  • Extavia (interferon beta 1b)
  • Gilenya (fingolimod)
  • Lemtrada (alemtuzumab)
  • Mavenclad (cladribine)
  • Plegridy (peginterferon beta 1a)
  • Rebif (interferon beta 1a)
  • Tecfidera (dimethyl fumarate)
  • Tysabri (natalizumab)

I hope this will help as a starting point so that you can tell which ones have been recommended by your neurologist. I don’t have RR (I have PP) so I expect that other contributors will be more helpful.

Anthony