Hey new diagnosis

Hi I was diagnosed with rapidly evolving server MS

It’s changed my life massively.

How is everyone doing and coping with MS?

My heart goes out to everyone it’s awful to live with such a struggle xx

Hi, I’m newly diagnosed. I know what type of MS I have, how many relapses I have had and what DMT is appropriate for me. I also know that I have active disease. I have been advised I must have a lumbar puncture before the DMT is given. It’s taking a while to get an appointment for a lumbar puncture and I’m getting new symptoms in my leg. I don’t have access to MS nurses at the moment and am a bit worried irreversible damage is being done whilst I am waiting for my next appointment. Has anyone had a similar experience or can anyone suggest anything to either minimise damage or get things moving with the appointment?

Hi can you contact your neurolgoist they all have secretarys or speak to your GP and ask them to chase this appointment. It should not take long for an LP.

worry does not help with MS or stress either, so try to relax i know its hard, but i doubt you will have worsening damage waiting a few weeks. some people have waited years for diagnosis and have done well once they get going with treatment.

keep healthy eat well, pace and try to relax ok. I know non of that is easy. But you can do it. but i would ask GP to chase this for you ok. xxx

Hi wow new one on me. I found that they use fingolimod (Gilenya®) for this as the best option. I think everyone on this forum has different forms of MS and all cope differently.

I have PPMS. took long time to get diagnosed.

If you feel comfortable sometimes it is better to use a name as not everyone respons to anon posts. You dont have to use your real name i dont I am CC (CRAZY CHICK), NOT I hasten to had i am crazy well i am probably lol but i used to breed rare chickens.

My heart goes out to you too, let us know how you get on in your journey ok. xxxxxxxx

Hi there,

Sorry about long gap before my reply. How are you doing and any further forward. As your post was in November really hoping things are better for you

i was diagnosed July 2010 by differences in MRIs. I never had a lumbar puncture - actually I refused - I didn’t see the point as already had diagnosis.

Started DMTs without Lumbar Puncture.


Min xx