Hello
Diagnosed February 2020, optical neuritis in 2003 then 2018 severe electric shocks in one leg (caused by a stressful time).
Neuro won’t put me on DMD’s as ‘I don’t qualify’! Even though I have poor balance/coordination issues, numb feet etc.
Since last summer, I have gone downhill to say the least, can’t walk far, fatigue, the normal…
Surely if one is diagnosed, the offer of DMD’s is par of the course.
Any feedback much appreciated.
x
Hi, I was diagnosed on the 2nd of December 2020 at a appointment with my neurologist, she said on a scale of 1-10 I am at number 1 but she offered me a dmd there and then and told me to choose what one I thought would suit my life style the best, I thought the general advice was to go on them ASAP , I choose tecfidera which I am starting next week, I would ask for a second opinion,
I understand your frustration. I was finally diagnosed sept 2017 and not offered DMT until over a year later. Nothing actually changed in this period. I asked about DMT as I had looked at the guidelines and as far as I could see met the guidelines. When I asked the reason for the change of opinion, it was because they had reviewed my case at a multi disciplinary meeting - they hadn’t even looked at the most recent mri ( which I’d just had and which hadn’t changed) - but reviewed the information from a year ago! The guidelines for RRMS state you are entitled to treatment if you have had two relapses within two years or you may also have treatment if you have had one attack and a separate enhancement on mri within two years.I know there is a trade off between side effects of DMTs - but when you ask about progression they can’t say, so I found the whole thing stressful. I’m not sure what to recommend, but it sounds like you have clearly stated that you want to take a DMD ( as some people don’t) which is what I did, so maybe they might review at a later date and come to a different opinion as happened with me. ( It may be at these multi disciplinary meetings that other parties disagree with your neuros view - I’m not sure how it works). The only thing you can do at the moment is try and lead a healthy as possible lifestyle as you can and make your view known. Hope things work out for you.
Has your neuro given a reason other than you don’t qualify? I find it really difficult to understand that some people qualify for DMTs and others don’t… I’m about to start Plegridy, I have CIS, but my risk factors are such that my neuro wants me on something. With CIS I believe there are only 3 options and my neuro only suggested Plegridy. I know he wants me on it as a preventative measure and I know he is quite cautious, but is it worth getting a second opinion. I know that they have to apply for funding for the drugs, as they are quite expensive, so they have to justify why you need it… what is your diagnosis, if you don’t mind me asking…?