@HayleyCousins94

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HayleyCousins94

Newbie

Hey (: My names Hayley, completely new here and not really sure how this all works but thought I'd give it a go I'm 22 years old and from Cambridge I got diagnosed with MS on the 17th of June 2016 after having tingly/numb hands and legs and blurred vision I was given steroids for the first 5 days but on nothing now going back to the hospital on the 29th of July to discuss treatments so if anyone has any advice on treatments? MS nurse spoke about lemtrada but I've heard pros and cons! Anyways ... Just wanted to say HI to everyone :)

Stumbler

@Stumbler

Hi @hayleycousins94 and welcome. Yes, this is the way this place works. It's friendly and very informal. Anyway, it would be worthwhile you doing a bit of research about what treatments are available and what they entail. Here's a good place to start, http://support.mstrust.org.uk/file/MSDecisionsWeb.pdf . You probably have a raft of questions, so you ask them and we'll try and answer them. :wink:

potter

@potter

Yes you need to be well armed with information when you talk to your neuro. I thought mine would just prescribe one for me but he said I needed to research and decide on one. There were only two available at the time, it didn't take much time to decide. Now there are many to choose from, so do your research and ask a lot of questions. Potter

HayleyCousins94

@HayleyCousins94

There's 11 treatments available to me, I didn't realise I would have to choose one for myself! I will definitely have to do my research (: Thanks for the link and your comments!

TraceyP

@TraceyP

Hi @hayleycousins94, I am also from Cambridge and am only slightly further down the line in the process - I was diagnosed at the end of March this year and had my appointment to discuss treatment at the beginning of June. I have decided to go for the Lemtrada option and am all booked in to start treatment in the middle of August (this was expedited due to another relapse since my appointment to discuss the options). As we're under the same hospital (and probably a lot of the same Dr's and staff) I just wanted to say feel free to message me if you have any questions - being slightly further into this whole ting I can hopefully answer any questions you might have about next steps around here. Also, I have found lots of very helpful people through here who have helped me no end, I'm sure they can do the same for you too. Take care, Tracey

Stumbler

@Stumbler

@hayleycousins94 , it would seem that you are being considered for the most effective treatments, if Lemtrada has already been mentioned. There's the notion around quite a few neurologists that MS needs to be treated hard and fast and it looks like your team share this view. All treatments come with a risk, but MS also comes with risks. So, you need to weigh up the treatment side-effects against the potential for MS to render you disabled. So, do your reading so you can take an active part in the discussions about your treatment.

Phill_Mogridge

@Phill_Mogridge

Hey @hayleycousins94 , I'm quite new here too, like you I was diagnosed earlier this year (end of May) and same with me, been on couple of courses of steroids so far. I've discussed the treatment options with my neuro and they're going to put me on Lemtrada end of July. The reason according to them, was that I've had 2 relapses in a very short space of time so they believe an aggressive treatment like Lemtrada would be better compared to first line treatment (drugs or injections). When he was talking about the risks involved with Lemtrada it does sound a bit scary, but for me I think the convenience of it (only go into hospital once a year for 2 years) is what I think is best for me as well as the fact it seems to be the most effective, so I'm willing to take the risks. But it's your call at the end of the day :) I'd be happy to give you an update with how I get on with it, as I believe I should be starting on 25th July along as it all goes to plan.

HayleyCousins94

@HayleyCousins94

@traceyp thank you that's very kind! My MS nurse is Mary Fraser who is lovely and has been very helpful! I wish you the best with your treatment I'd love to hear updates on how it goes! :) @Stumbler that seems to be the path my doctors are going down attack MS hard and fast but I will definitely do my research - thank you for your advice! @phill_mogridge that's what my MS nurse has discussed with me, because I've had a few episodes in a short amount of time they seem to be suggesting the lemtrada treatment The side effects do seem pretty scary! But like you said it does seem to be the most effective and hopefully the pros out weigh the cons in the long term! Yes please do! :) wish you the best with your treatment

TraceyP

@TraceyP

@hayleycousins94 - Mary is my nurse too! she's fantastic and like you say she's very helpful. Of course I'll let you know how it goes and if you want to ask me anything before your next appointment (or any other time) I've sent you a friend request thing on here so you can message me that way. I completely agree that Lemtrada sounds scary but personally I found the possible side effects of it less scary than I find those of some of the other options - it really is one of those things you need to read up on as much as you can and then make the best decision for you, no-one can do that for you. I have so far found that the staff at addenbrookes are keen to let us be very involved in the decision making process so you will have a choice, you wont just be told this is what you're going to get. Good luck with it all, the research can be daunting but there's plenty of help from.places like this along the way. ?

Icela

@Icela

Haley I hope your doing well and your strong. I have 6years with ms. My first treatment was 5 days of steroids also ,. weakness on my legs and my left eye would go in. It seemed as if I would cross eye my eyes. Then my neuro gave me rebif injections 3 times a week. You should talk about that treatment with your neuro. God bless!

TracyD

@TracyD

@hayleycousins94 Welcome and good luck. It sounds like you're going to have a great team of people working with you and the start of a local 'lem-club' as well with @traceyp :-) Today is week 8 for me after round 2 of Lemtrada. That's it I'm done - unless I ever relapse again no more treatment for me. My MS symptoms are gone, my MRI's confirm it's not just me being optimistic, I really do have no new lesions, no enhancing lesions and my old ones are less pronounced than they were. The story of the last year is on but blog I regularly post links to on here, or it's available on Amazon for the bargain price of £1.99 with the proceeds coming here to Shift :-) https://www.amazon.co.uk/dp/B01GE1V00M If you want to talk I'm happy to share contact details xx

Sharon_Bletcher-Green

@Sharon_Bletcher-Green

Hiya! I'm new on here but was diagnosed last July. I too expecred nurologist to just put me on medication but he gave me 5 options to choose from. I weighed up options and chose pleg

Sharon_Bletcher-Green

@Sharon_Bletcher-Green

Stupid fingers !!! Plegridy an epi pen once a fortnight It was scary reading up but it does come down to how you feel about pros and cons. But the consultants are amazing. X

heidi1888

@heidi1888

Hi new to this tonight not sure what to ask say all very new lol ???cxxx

Stumbler

@Stumbler

Hi @heidi1888 and welcome. There's no right or wrong way to use this site, it's very informal. Start new topics, or add to existing ones. Ask anything you like - a problem shared is a problem halved.