Hi everyone i am 35 female and have recently been diagnosed, i am unsure on treatments and things at the moment, as i have only just found out. Any advice, guidance or information would be welcomed.
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Hi there from a 70 year old guy who was diagnosed around 18 years ago.
Have lots of advice , experience and info if you want.
Have you had an appointment with a neurologist to discuss the diagnosis, next steps and possible treatments?
Hi,
From what you say, I’m guessing you have relapsing MS? (not primary progressive).
I was at your stage a year ago.
My way to deal with it was to do lots of reading about MS and make some notes. In a strange way, I “enjoyed” some aspects of the research… it’s a fascinating disease.
The sources I found helplful, apart from neurologist/MS nurses, were:
- MS society/MS Trust websites
- MS Selfie DMT Info Cards
- Gavin Giovannoni’s blog (he is an NHS MS neurologist, but I would still ask my neurologist for a second opinion - as an outsider you never know if someone’s views are mainstream or not)
- The website called “MS Translate” (search for "multiple sclerosis translate) which describes MS research in lay terms
- Anything I could find from the major MS research conferences, ECTRIMS/ACTRIMS, especially things aimed at patients.
- MS academy videos on youtube (aimed at doctors/nurses but still interesting)
I try to read reliable, evidenced-based sources but the internet is a bit of a minefield. There are plenty of people out there to exploit us by recommending unproven treatments or “cures” with little or only weak evidence to back them up.
From my reading, I decided that (1) I wanted to start a DMT as soon as possible, and (2) I was prepared to take a high efficacy DMT, even if there might be more side effects. The point is, I’m ok now, but I am worried about what happens in 15 or 20 years. The consensus seemed to be that early, high-efficacy treatment was more effective in the long run.
Within the high-efficacy group, my next priority was to minimise hospital appointments so I can get on with my life!
A year in, I don’t regret my choice as yet. I’m on Kesimpta. With the exception of the first couple of weeks, the side effects have not really been noticeable. I have had a few annoying colds, but everyone gets those.
Different people may have other considerations. For examle, some people are planning to start a family. And some people just don’t want to take drugs, or prefer the risks of MS disability to the risks of side effects. It can be a daunting choice to make - but there is plenty of help to out there.
If you narrow down your choice of DMT, you can also ask people here or at the forum “shift.ms” about their experiences, just to get a personal perspective.
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