Last reply 3 months ago
Treatment

Hi all , I am new to this, but just wondering your experiences accessing DMDs. I have had MS for two and a half years, finally diagnosed a year ago , I was originally diagnosed with Clinically isolated Syndrome. I was told last year that I have an 80% chance of getting it full blown within the next 5 years. I believe I have relapsing and remitting, although never been told this.
I have had 2 terrible relapses in the last 9 months, but am still being refused any treatment. I have had to reduce my work hours due my symptoms and the unpredictability of them and I’m really struggling and now feel I may have to give up Work completely. Has anyone else had this problem?

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stumbler
4 months ago

@trinad , something is obviously wrong somewhere. I fear there might be a communication problem with your Neuro. When was the last time you saw them?

A formal diagnosis of MS has to satisfy the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) and I’m wondering whether this is where wires may have become crossed?


trinad
4 months ago

Hi
Thanks for your reply, I last saw them at the beginning of this month as I had a relapse, I have of couple of lesions on my brain picked up in my first scan s couple of years ago, I also had a positive lumbar puncture result, so reading the link you sent me, I believe I should be on some form of treatment to help with the relapses and the intensity of them.


highlander
4 months ago

Hi @trinad
Your on the right track…
In the nicest possible way make a nuisance of your self with your Neuro or ms nurse, don’t let them fob you off.
It’s not them that have to live with MS.
There are complaint dept in most hospitals called PALS might be worth giving them a ring if you don’t get anywhere with your Neuro team.
Good luck


stumbler
4 months ago

@trinad , yes, contact your MS Nurse and just explain that you’d like to discuss DMDs. And see where that discussion takes you.

I’m starting to fear that your diagnosis may still be Clinically isolated Syndrome (CIS). Perhaps your GP surgery can scan through your records to see whether they’ve been notified of anything formally by your Neuro.

The following section of the NICE guidance on Multiple Sclerosis may be of interest to you :-

https://www.nice.org.uk/guidance/CG186/chapter/1-Recommendations#providing-information-and-support


trinad
4 months ago

Many thanks for your replies. I am
In the process of trying to see another neurologist in London. I was told at my last appointment my MS is functional not structural? Never heard this before.🤔


stumbler
4 months ago

@trinad , That’s a new one on me too. Do let us know if you get an explanation.


bernadette
3 months ago

@trinad even if you have CIS you can be treated with a DMD so push for more active care is what i would suggest, being persistent will pay off
good luck

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