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nutshell88
5 months ago

I was diagnosed age 17 too 2004
Now im 31 still rrms
I was refusing treatments because i feared their side effects


stumbler
5 months ago

Hi @lisa_henderson and welcome.

There’s definitely some who would say that you’re lucky NOT to have tried any meds, so there are differing views.

And, yes, there are members like you. You can get an idea of who they are by using the Forum Search function (magnifying glass, top left) and selecting the “Search members” tag. Unfortunately, the results will only contain details of members, who have completed their profile and shared that information.

But, trust me, you are never alone. 😉


peterfrancis
5 months ago

Hi @lisa_henderson

I too have Progressive MS, diagnosed in late 2017.

I was prescribed Gabapentin and Baclofen pretty much straight away to help combat some of the symptoms.

I am not suited to take the DMD’s as I take Insulin for Type 1 Diabetes, Insulin and the Steroids don’t go well together apparently.


henning_kielhorn
5 months ago

I have progressive MS as well, so you definitely aren’t alone. Diagnosed in 1998 and I was on interferon initially, but then came a long stretch when no medication was deemed appropriate for me, as the MS had been progressing too quickly. A little bit of baclofen was pretty much all I got as well. There wasn’t anything else out there for the longest time, so appointments at my neurologist weren’t something I looked forward to. I too know the feeling of being just a number. Last May I started on rituximab (the one that came before Ocrevus) and that seems to have had an effect, which is a bit of a miracle after all these years.


lisa_henderson
5 months ago

Thankyou every1..Iv been to physio today
In October I had major opp on my neck front n back n spine
Removed vertabrates 5 6 7 n
balance is poop
My ex m.s nurse has left Sunderland
I have a new one n she sound fantastic
She is also gonna help with my bowels coz I go for poo once a month n half

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