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@amsut 

Last reply

amsut

New here and to MS! Looking for treatment advice

Hi everyone, I'm new here and new to MS (three weeks diagnosed). I'm on a really long, 12-17 week waiting list to see an MS specialist and to start the ball rolling with treatment. I was wondering if anyone would be able to share their experiences of choosing treatment? From what I've read, I would definitely like to try Ocrevus, but was wondering if you get a say in that, or if the neurologists pick for you? My symptoms (for my first obvious relapse) have been pretty bad - both legs numb, tingling, intense itching, fatigue and painful spasms in my toes that left me immobilised for two weeks. I'm really hoping they put me on treatment as I was unable to walk for weeks and can only imagine this getting worse, but really don't know what to expect. Thanks x
Glasgow, Scotland, United Kingdom
18
@Vixen
@Vixen
 

Hi @amsut, welcome to Shift, but sorry for your diagnosis. How long have you been having symptoms for with this relapse? It's very important to focus on recovering well, for example, resting loads, eating healthily and not smoking. It's very tempting to push yourself to do the usual things to prove you can still do them, but it's most important to take things one day at a time and not overdo things. Ocrevus is certainly a chief contender on the scale of things, but isn't always suitable for everyone. There are lots of others; the MS Society will tell you a little bit about each, and you can search in the magnifying glass on here for different folks experiences with them. I went for Tecfidera; 2 tablets a day, easy peas, life carries on as normal. Some prefer infusions, some injections, it's a personal choice. There are also some who choose to go the natural route and opt out. You have lots of support here, and we've all been there. Look after yourself, and treat yourself well x

@amsut
@amsut
 

Hi @Vixen, Thanks for responding!!! It's so nice to speak to other people in the same boat. I started having symptoms about six weeks ago. Started off very mild, and gradually got worse until I could hardly move. Now I'm just left with some mild numbness/stiffness in left hand and legs, but the pain, itching and fatigue seem to be getting better. They reckon I've had previous relapses that I haven't noticed because they were much milder, but they say it's "new", so who knows. I've been staying with my mum for the last two weeks and I'm allowing myself to be mothered!! You're definitely right that putting aside things that aren't that important in order to focus on recovery is essential. I've been going through the grief process the last week or two - generally felt quite upbeat after leaving hospital because I was so happy to know what was going on with my body, and the neurologist was pretty positive about the whole thing. But being left alone for so long sets the anxiety off. Good to hear your experiences with treatment - 2 tablets a day seems like a good option. To be honest I never want to see a needle again after the lumbar puncture but will put up with anything if it works. Thanks again for responding x