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Newbie looking for advice

Hi everyone,

this is only the second time I have posted on here, I havent yet been diagnosed with MS but i dont think the diagnosis is far away. Im 25 and a year and a half ago I had optical neuritis and was diagnosed with clinically isolated syndrome, Last week my left side from my ribs to my feet went numb during the night and has been ever since, not totally numb, I can still walk but feel like I have been given anaesthetic. I went to my neuro today and he said it sounds like it could be a relapse and will do another MRI which might take a few weeks and if any more lesions are there he will discuss treatment for MS. I am just wondering if people stick with the NHS or go private as my partner has suggested private to see if they can move things quicker. I thought they would do an MRI sooner than ‘a few weeks’ and start treatment asap to help this in the long run but dont seem in any rush. Has anyone got any experience or advise on this and also any advise on DMD?

Thank you!

Hi Sophie

It’s a hell of a thing to be facing a potential MS diagnosis at such a young age. You have my sympathy.

To be honest, I don’t think you are likely to gain any speed by going private. A private neurologist is going to want an initial appointment before doing an MRI so you’d have a few weeks wait anyway. And MRI tests are really quite expensive. And assuming you are diagnosed with relapsing remitting MS, you’d then presumably want to be referred back to the NHS for disease modifying drugs (which cost scads more money). And the NHS neuro would still want to do an MRI before giving you a DMD.

A few weeks to do an MRI sounds quite quick to me anyway. Many people wait months for an initial appointment with a neurologist, and then months more before the MRI.

In terms of the DMDs, have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You are not likely to get completely free choice of which DMD you get to start on. It will depend on how active your MS is, the prescribing centres that are set up locally, your neurologists preference and of course your choice.

Do let us know how you get on. If you find there is going to be a long wait for an MRI, you could try for a private test, the best way to go about that would be to see if your NHS consultant has a private practice. If so, you could contact his secretary for the NHS practice and ask for advice as to how best to speed things up. But you could do that anyway, even if you want to keep things entirely within the NHS, ask for the secretary’s assistance.

Best of luck.

Sue

Hi Sue,

im not going to lie I’m having a really hard time trying to come to terms with it all, i feel like i shouldn’t have to deal with this at 25, its hard at any age but just as I feel ready to move out, have children etc this hits me like a ton of bricks!

Thank you for your advice it is really appreciated! I just want to try and get the best treatment possible to help with disability in the future, I’m terrified of loosing my independence and not being able to lead a ‘normal’ life. I have been reading about the DMD and they all sound pretty scary! Its definitely something i would do but the decision will not be easy thats for sure.

I hope your doing okay and thanks again for the support!

Sophie x

Sophie

By no means is it bloody fair for you to have MS diagnosed at this stage of your life. Fair enough, it’s hard at any age, but just as you get started in life it seems wrong.

I started with MS at the age of 30 and was diagnosed at 35. I’m now 21 years in, so definitely not someone you should compare yourself to. Today there are brilliant disease modifying drugs. Yes, there are challenges and some of them have side effects. But by no means is that (in my opinion) a reason not to take a DMD. They should stop you losing independence, becoming disabled, having MS rule your life.

And whatever happens in the future, you will never stop being you. And ‘normal’ sometimes just takes a bit of adjustment. Your new normal will probably include taking some drugs. But hopefully that won’t stop your plans for the future.

Sue

I know it is very hard, i was hoping to have children within the next couple of years but now that seems so far away as most of the treatment says to not get pregnant.

Everytime i see someone in a wheelchair it makes me so upset to think i could be bound to one, one day, I know its selfish but i cant help it. I already feel like i dont want to be a burden on people and try not to talk about it too much because i dont want people to get sick of me. I have been with my partner for 7 years and he says he will be with me every step of the way but I dont want him to be stuck with me when he could be living a more normal life and i would hate to think that one day he will need to look after me.

I take my hat off to you for being so strong when you have been living with MS for years, i really do. I am hoping next time i see my neuro he will discuss the treatment options with me and be able to put my mind at ease a little.

thank you for your support!

You could ask for the DMD Copaxone, which can be taken during pregnancy, see https://www.mssociety.org.uk/what-is-ms/womens-health/pregnancy-and-birth So it is still possible to have children.

Don’t feel bad about not wanting to become like me. You don’t have to. Plus, it’s unlikely that you will. The DMDs are so much better now than they used to be (and you can swap to a more effective drug in years to come).

And with regard to your partner, neither one of you asked for MS. We should never forget that MS isn’t something that on,y affects us, our partners, parents, children, friends also have to live with the batad disease.

As for being strong, I’ve got no choice. I have been unlucky with DMDs. And now am progressive. But, I have the absolute best husband in the world. Yes, he does do a lot for me, but we manage to just muddle along together.

Don’t plan on being disabled. Do everything you can to not be. That includes getting your muscles as strong as you can. Eat healthily, exercise, I would never say don’t drink alcohol, just be sensible and don’t take risks. Take a disease modifying drug. Get advice on having children with MS, probably once you’ve got your head round the diagnosis, think about having them sooner rather than later. Then change DMDs to a more effective one.

And make the most of having a good man who loves you. Do remember that you may have MS, but the person you are does not change. You will still be you regardless of what happens in the future.

Sue

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Thank you so much sue, your comments have really meant alot and it makes me feel like im not alone in all this. Im going to have to do more research into all of the DMD and hopefully I will find one that suits me.

Im certainly not going to take my partner and family for granted. I eat fairly healthy but am going to be more aware of this, i joined the gym a couple of months ago and have been doing alot of weights but unfortunately have had to stop the past 2 weeks because of the numbness but i am going to get back into it but maybe just more cardio which i dont enjoy as much as weights but i need to take it slowly. I am avoiding alcohol at the minute as I dont usually drink too much anyway but over Christmas I over did it and I’m starting to think that alcohol and eating alot of bad food might have something to do with the relapse.

Again thankyou sue!

sophie

Hi Sophie,

Instead of standard gym exercise have you thought about something more thoughtful like Pilates, yoga or Tai Chi? They can be just as helpful with the added benefit of balancing the body against the daily strains of living.

Regards,

Anrthony

Hi!

thank you for your comment, it is something I thought about over the past couple of days and i am going to try and find a yoga class that is at a suitable time and maybe try swimming aswell as im hoping that might help?

sophie