@ShadowFox

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ShadowFox

MS Diagnosis ... finally!

So I posted last week about being new to Shift and awaiting MRI results, and thought I'd give an update ... More lesions on the brain since my MRI in August 2017, but spine is clear. Neuro confirmed I have RRMS. As with many here, I'm relieved to have a diagnosis even if MS isn't exactly good news. Feeling more positive than I would have expected as now I can look into treatment options and hopefully start feeling more like myself.

Stumbler

@Stumbler

@shadowfox, a diagnosis does allow some direction in one's life. Anyway, onto other, legal matters. Now you have a diagnosis of MS, you do have to advise the DVLA, if you hold a driving Licence. You also need to advise your car insurance company too. Although, they'll only be interested in the fact that you've advised the DVLA.

grandma

@grandma

At least you have had the niggles and queer symptoms confirmed, you are not going nuts as one often thinks with ms before it is confirmed. Now you can put that behind you and start to look to the future which is no longer with the life sentence ms used to be. A diagnosis is no joke, but you have picked a good time ( ha ha) as there are lots of dmdt's these days when there wasn't 24'yrs ago when I was dxd.😍

ShadowFox

@ShadowFox

Thanks @redd, @grandma, @nutshell88 and @stumbler. Thanks in particular for the DVLA advice, I hadn't been informed of that aspect so have it sorted now. I received a big pack of info from my MS nurse regarding treatment options, so far I'm looking at Copaxone and Rebif but still researching. It definitely makes the diagnosis seem more real, but I'm really grateful to be able to search through old posts here for info from people in the same boat.

Vixen

@Vixen

Hello @shadowfox, nicely taken on the chin! The DVLA will likely renew your licence every three years, subject to clearance from your neuro. You can now start to focus on recovery in all aspects. You are in great company here and can hopefully put the awful ‘not knowing’ experience behind you and take time to make a new plan for yourself. But slowly, no rush x

Stumbler

@Stumbler

@shadowfox , Copaxone and Rebif are the original Disease Modifying Therapies (DMTs) and are now seen as the first line treatments. The present thinking is to hit the MS hard and fast, with the most effective treatments. This will hopefully avoid acquiring any damage, possibly disabling, whilst you try the less effective treatments.

ShadowFox

@ShadowFox

@stumbler When you say hit MS hard and fast, do you mean starting with the IV options?

Stumbler

@Stumbler

@shadowfox , the IV options do seem to be the most effective treatments at the present time. Although keep an eye on Mavenclad (Cladribine) (https://www.mstrust.org.uk/a-z/mavenclad-cladribine) , which is an oral treatment. The other option is to start on the least effective treatments and then move up if and when you acquire any damage. The phrase, "time is brain", is quite pertinent.

ShadowFox

@ShadowFox

@stumbler Thank you for clarifying, unfortunately I don't think Mavenclad is approved in Northern Ireland yet. Also as I'm a 30 year old woman with thoughts of potentially starting a family in the next few years, several treatments are seen as not suitable., so that complicates things slightly.

Lightning87

@Lightning87

Welcome to our exclusive club!! I found the diagnosis a relief also I have to say. Not saying it’s a nice diagnosis but it could be worse and at least now we know what we are dealing with. If you ever need a chat please feel free to message me any time x

Stumbler

@Stumbler

@shadowfox , do have a look at Lemtrada. It does seem to be a bit more "family-friendly". As a drug, it passes through your body in a matter of weeks. So, with two rounds of infusions, a year apart, then that's it. Worth consideration.............

ShadowFox

@ShadowFox

@redd That's good to know, would you recommend Copaxone given your experience with it?It has definitely been a front-runner in my choices. @stumbler thank you, I'll definitely look into it and discuss with my MS team. It's tricky to know how best to approach it but I'm sure I'll find something to suit me. @lightning87 Thanks, it's definitely not a nice diagnosis but it's helpful to know what's going on!

ShadowFox

@ShadowFox

@redd It's... a lot. I'm not gonna lie, I've been ok with everything so far but when you see the treatments it kinda hits home that this is just the start and that's quite daunting. I'm not worried and I know it'll be ok, it's just a lot of info to go through and making a decision when there are so many factors to consider is bewildering. But I appreciate personal recommendations and experience to help me choose, which is why this board is so helpful.