Update - I've got MS - Results appointment coming up?

New diagnosis and before diagnosis
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Hi everyone!

I’m completely new to the forum but have been reading around.

I’ve had Ankylosing Spondylitis for about the last 4-5 years.

I had iritis in September 2017 and then I had a bout of BPPV and nystagmus in August 2019.

I went to the eye hospital with the latter because my vision was totally wonky and I was going on holiday (remember those) a few months later and didn’t want my vision to be messed up (so I couldn’t see the views etc). I ended up having loads of scans includingng an MRI but they weren’t really able to diagnose anything.

When I had the MRI, I felt a bit dizzy getting up but I thought that was just me being a drama queen. But when I went to bed that night, I felt dizzy again when laying down. So I googled it, found that it was likely BPPV and did the Epley manoeuvre a couple of times a day to resolve it!

Because of my AS, I have a regular yearly appointment with a Rheumatologist. She decided to refer my scan to Neurology, whothought that I had MS. I had another MRI which showed lesions on the brain. I then had a lumbar puncture which was consistent with MS. I also had a chest MRI and blood tests back in October.

I finally have another appointment with my Neurologist in 2 weeks. It’s a phone appointment. After I confirmed the date and time, the secretary asked if I would be at home. I said yes and she said that was fine. The fact that she asked make me a bit suspect because I wonder if they wanted me at home as it’s bad news.

Anyway, sorry this was a long one. It’s just great to find a community like this.

Cat

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Hi Cat

welcome to the forum.

It is a marvellous community.

Wow, You have had quite a few almost diagnoses.

The Neurology one will be the big one.

Are you prepared for it being a dx of MS?

You were probably asked if you would be at home for your telephone appointment because you could possibly be driving.

Good luck Cat.

You’ll be full of questions which the good people on here will try to answer or at least point you in the direction of where answers may be found.

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Hi Cat, good luck with the phone appointment,

I dont think it necessarily means bad news with being asked of you`ll be at home.

I`m sorry to read how your health isnt so good.

But we MSers will do our best to support you.

Boudsx

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Thanks both!

As this has been going on for a while, I’ve mostly prepared myself for it but I don’t think there’s anything that I can do to prepare myself of the definite diagnosis! Like, actually being told will be something difficult to handle.

After my first face to face with the neurologist in August (after the MRI but before the lumbar puncture), she also gave me a “so you have MS” leaflet (Simpsons reference!) and she was already confident when I had my first phone consultation in May.

As I say, we’ll see!

Cat

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Hello Cat

Welcome to the forum. It does sound like you will certainly be getting a diagnosis of MS. Which you already know. You just need that final ‘you have MS’ told to you by the neurologist!

Once you’ve heard from the neuro, you should perhaps ask whether s/he thinks it’s relapsing remitting MS as opposed to progressive. Relapsing remitting is the most common variety (about 85% of people are at least initially diagnosed with it). Nystagmus is something that can quite often occur with MS, as can vertigo of various types. If you’ve had symptoms that have appeared, stayed with you for weeks or months, then completely or partially remitted, then it’s very likely that you’ll be diagnosed with RRMS.

If that’s the case, you could ask the neurologist if it’s not already mentioned, about disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses. You could have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid in advance of your phone appointment. This way, you’ll be aware of the different drug options. What you should take particular notice of is the benefits in terms of relapse reduction rate and the potential for side effects.

Best of luck to you.

Sue

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Thanks for your message Sue!

I actually thought that I had posted as well as updated the title of the post but I don’t see it here!

I had my appointment yesterday and my Neurologist confirmed that it is MS. Unfortunately, I forgot to ask which type, but I’m pretty sure it’s RRMS.

I’m being sent some information about the various available treatments and will have a follow up to make the decision on what I want to go on.

To be honest, although I ssaw it coming, I’m still in a bit of shock. I called in yesterday to take today off work (I had already booked yesterday as annual leave). I just don’t believe it because I didn’t think it was that bad even though I have Ankylosing Spondylitis which causes me daily pain. Reading up on the MS Decisions page, and seeing that I will likely have to self administer injections is quite daunting.

I’m sure it’ll be a long road, I think I just need to really come to terms with it all!

Cat

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Hi again Cat

Try not to worry. I know that’s easier said than done, but just try.

So long as you’ve had remission from attacks in the past, and it sounds like you have, then it’ll be relapsing remitting.

With regard to DMDs, you will probably not be self injecting. The first line of treatments includes Tecfidera and Aubagio - both are oral (ie tablets) therapies. Personally I don’t much like the look of Aubagio, it’s not as effective as Tecfidera (30% versus 5% fewer relapses) and has a long list of possible side effects.

There’s also Ocrevus. This is a 6 monthly infusion and it has a 70% average relapse reduction rate.

You’ll need to speak to your MS nurse (you probably don’t have one yet, but I’m sure you’ll be in touch with one soon) about possible treatments.

Given the restrictions at present due to Covid, it’s highly likely you will be pointed in the direction of Tecfidera in the short term (ie, staying well away from hospitals!). But later on you’ll be able to switch drugs.

Just supposing though you were only offered a self injectable drug, it would be a subcutaneous injection. This means just under the skin and could be as infrequently as once a fortnight. Self injecting honestly isn’t as bad as it sounds.

I know that getting a diagnosis of MS, even when you are expecting it is horrible. And it takes a little time to get your head around, but truly, it needn’t affect your life hugely in the next few years at least. You may even find that 10, 15 or more years go by and no one would be able to tell you have MS. (Or even longer.) There are new drug treatments becoming available all the time. They are tending to be more and more effective.

Keep yourself active, keep (or get) your fitness levels up and you will be fine. When you’re not, when you need people who understand to talk to, we’ll be here!

Sue

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