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Newly diagnosed | When do you start treatment?

I was diagnosed 3 weeks ago and I think I’m having another relapse. I was just wondering how long do people usually wait from when they have been diagnosed to when they receive treatment?

hello hammond

didn’t either the neuro or ms nurse talk about treatment options?

if not then i suggest you get in touch and ask about them.

at my diagnosis i was introduced to my ms nurse who discussed my options and i decided on the spot to go for copaxone.

meanwhile it is a good idea to make yourself familiar with the names of the different drugs and get an idea of what they entail.

the MS Trust have a leaflet outlining them.

don’t panic (shades of dad’s army) the system works at its own pace i’m afraid.

keep a diary of the weird and wonderful things going on with your body so that it is clear in your mind.

it will help you to explain to the neuro.

Hello

I think the time to start treatment is ASAP. But different neurologists and/or hospitals have different ideas.

If you are having a new relapse, then you should let your MS nurse (assuming you have one) know. Failing that, phone your neurologists secretary and explain to him/her your situation. Ask for help in scheduling an appointment with the neurologist specifically to discuss disease modifying drugs (DMDs).

As Carole said, familiarising yourself with the various options is a good plan. Here is the link to the MS Trusts Decision Aid: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

You aren’t likely to have a completely free choice of all the drugs. It depends on how ‘active’ your MS is (it seems quite frisky to me, if you’re having a relapse now). I would expect you to be given a choice between several drugs. Your neurologist and MS nurse will have his/her own thoughts on the various drugs, so be guided by them, but remember, it’s your body and your MS. You should make the final decision. Possibly together with your partner if you have one, or family/friends.

Also as Carole said, keep notes of what happens to you so you can relate it to the neuro/nurse.

In terms of your current relapse, if it’s mostly sensory, then it should remit of its own accord. But if it’s more serious, involving optic neuritis or motor functions, then speak to your MS nurse or GP and see if you can get some high dose steroids, the sooner the better. Steroids aren’t a cure for relapses, but their aim is to shorten the relapse. The faster you start them, the more likely they are to help bring the relapse to an end.

If you’ve not had steroids before, be prepared to feel horrible while taking them and for a few days after. They leave a horrible taste in your mouth (take them with milk or a probiotic drink and eat mints through the day), they make you a bit ‘speedy’, can cause extreme bad temper and sudden anger, and almost always disturb your sleep. They can also make your stomach or oesophagus feel terrible, so get some omeprazole while you’re on them and/or gaviscon.

I do hope your relapse comes to a speedy end and you get a decent DMD to avoid as many future relapses as possible.

Sue

That wasn’t supposed to be anonymous. Sorry.

Sue

Hello, I have just been diagnosed after a roller coaster few weeks. Within a few weeks it’s gone from CIS with expectation of progressing to MS in 15/20 yrs, to probably MS but not suitable to take medication to a follow up letter from neurologist saying that it is MS and 3 DMD suggested ! The MS Nurse have sent info on treatments and have to wait now for appt to discuss and start, appt sent for a date in November that I am unable to make & another appt not yet given. I haven’t met the nurse yet but info I have read says to start treatment as soon as possible. I feel a little overwhelmed and am hoping this forum will help.

Hello Lisa

Welcome to the forum. I imagine it’s not a place you ever expected to be, but you are most welcome anyway.

Have a look at the link I posted earlier (https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ) All the information about the various disease modifying drugs is on there.

What a shocker to go through three phases in very quick succession. It’s a strange time for everyone who’s diagnosed with MS. You’re probably not quite sure how to feel about it; upset, anxious, furious, scared, nervous, or a combination of all these.

It is a good idea to start DMDs soon. Their job is to reduce the number and severity of relapses. As to which one to start, it’s a good plan to discuss it with your MS nurse, but waiting till after November seems a bit silly. At this rate, you’ll get another appointment, discuss the drugs, then funding will be applied for, finally the drugs will arrive and you’ll be lucky to start in the new year.

If you have a clear idea of which one of the drugs you’d be happiest with, or want to debate it on here (maybe ask people their experiences?) You could then just write straight to the neurologist, explain that you don’t want to wait and that you’ve considered and would like to try drug A.

My neurologist told me the other day that I’m an easy patient because I just tell him what I want to do. It’s partly because I’ve had MS for such a long time (nearly 23 years), and partly because I’m someone who looks things up, understands the drugs and treatments and am quite naturally bossy!

It’s difficult when you’re first diagnosed because it’s all so new to you, and you’re probably still in shock! But feel free to ask whatever questions you have on here. If we can help, we will. Just remember that we are only fellow MSers, so take our views and thoughts lightly. If you want more definitive information, look on the MS Trust website or here using the About MS tab at the top of the page.

Best of luck to you.

Sue

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I was diagnosed in July. Had another MRI in August and I’ll see my neurologist at the end of Sept to get results and discuss treatment options etc

Hi

I hop eyou getthe treatment and attention we all derserve

I’ve had my initial 2 doses of Ocrivus and no side effects( other than going to Greece for two weeks on holiday ! )

Next one will be Jan 2020 ( in one dose )

The possible side effects scared the Cr@p out of me , but had another relapse - and qualified (!) for the drugs

so (Tingling) fingers crossed

Ray

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