@jessvf14

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jessvf14

First consultation since diagnosis

Tomorrow is my first consultation with the MS specialist since being diagnosed in May after 6 years of messing about and needless to say I am bricking it. It feels so real now and I have no idea what to expect. I'm hoping I'll be offered a DMT and have done plenty of research and feel happy with my choice (should it be offered). Sat here with my glass of red and a hubby who is wonderful but just doesn't get it, wondering what tomorrow will hold. Can't believe it's finally arrived...

Shevs

@Shevs

Good luck for tomorrow @jessvf14! Which treatment are you hoping for? Hope you get what you need, keep us updated.

jessvf14

@jessvf14

Thank you. Hoping to start with Copaxone. I know there are harder hitting drugs but until now my symptoms have fortunately been mild and mainly sensory, but with a moderate plaque load, so I'm not prepared to take the risks and side effects yet of the newer dmts but know I can progress on to them if I worsen. Just want to do something to feel like I'm fighting it though. Wasn't an easy decision but I wanted to be prepared and not waste any more time x

Stumbler

@Stumbler

@jessvf14 , make a list of any questions you want to ask and any concerns you have. Also, list the reasons why you have opted for the treatment that you want. This will save you forgetting anything. You have the diagnosis now, so it's all about how you manage this looking forward.

Shevs

@Shevs

I was diagnosed in April this year and like yourself I had/have very few symptoms. I just ran a half marathon in May ?. I just want to try and halt the disease and even reverse some symptoms and reduce plaques I already have. That is why I have chosen Lemtrada for my treatment. I wish you all the luck for tomorrow and hopefully you will have an answer soon. Good luck!!

jessvf14

@jessvf14

I have my little note book with all the pros and cons of the different treatments and a list of questions, though I'm sure I'll think of more after the appointment. It's weird because I don't know what to expect from tomorrow but I'm so hoping not to be as disappointed as I have been previously. I'm slightly excited in a way as it feels like I've finally made it to where I need to be, yet i am absolutely terrified at the same time x

Stumbler

@Stumbler

@jessvf14 , any question that you think of afterwards can always be directed at your MS Nurse. They're more accessible than the Neuros. :wink:

jessvf14

@jessvf14

It's so hard because you know that some drugs are ultimately fantastic for the MS but you're taking a gamble on the side effects and the progression of your own condition. I MAY be fortunate enough to only ever have mild symptoms but I'll never know and know it may all go tits up, so obviously I want to treat it. Feels like a case of choosing between risk of heart failure, risk of liver failure, risk of other autoimmune disease, risk of deadly infection AND we still can't guarantee you'll still be a mobile person. It all feels like such a gamble, and I've never been very good at that!

Hels99

@Hels99

You sound like your symptoms are similar to mine. I was diagnosed in March and I asked for Copaxone. I don't know where you are but if you're in the UK there shouldn't be an issue. They seem to get more 'difficult' when people opt for what are seen as second line treatments. I know it is different for everyone but a month after starting I felt so much better in myself. Good luck tomorrow!

Stumbler

@Stumbler

@jessvf14 , life is full of decisions. Sometimes, it not a case of selecting the best solution, but the solution which is least unfavourable, e.g. voting in a general election. We'd all rather to be not making this decision, but.......... Whoever said that life was easy, eh! :wink:

jessvf14

@jessvf14

That's it, picking the best of a bad bunch! It's all about managing like you say, trying to prevent 'the big one'. @hels99 I'm UK too so fingers crossed. Life has unfortunately thrown me many lemons, limoncello is now my speciality ha ha. Screw lemonade!

Hels99

@Hels99

Well, do let us know how you get on!

TracyD

@TracyD

let us know how it goes .... and if you've not been yet - don't wait to be offered, ask for what you want and explain why you want it xxx

jessvf14

@jessvf14

I got my Copaxone :) just need to wait for the nurses to get in touch. Then I nearly passed out after having my bloods done but I was shaking after seeing the neuro so never stood a chance with the phlebo!