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A working diagnosis

Hi :wave:t2:

Following some issues with ‘numbness’ and weakness in left hand and some drooping on the left side of my face, I’ve found myself with a working diagnosis of Relapsing Remitting MS.

At the ‘peak’ of my symptoms I was also experiencing severe fatigue, forgetting common words and family members’ names (I just couldn’t place them), struggling to process and understand sentences, balance issues and instances of less sharp vision.

Following a short stay in A&E where I had a head and neck MRI, I left with some steroids, a potential MS diagnosis (four lesions on that MRI) and a neuro referral and a second full spine MRI.

Things moved quite quickly and I had my full spine MRI and finished my steroids. I spoke to the neuro specialist last week who gave me a working diagnosis of Relapsing Remitting MS and his belief my first relapse was around 12 years ago when my right side went numb/heavy and we left it was a case of Transverse Myelitis.

He’s referred me for a lumbar puncture and MRI with contrast to confirm and we’ll look at DMTs and refer to the MS Nursing Team from there.

I’ve been told to expect a 4-6 week wait for those tests. The laid back guy in me is cool with that but people around me are suggesting I try and push for them sooner - any thoughts on that would be great.

In the last week, my vision has gotten worse on occasions as if I’ve not put my contacts in but worse. Not sure if it’s linked.

So yeah, I just thought I’d say hello and jot down my journey so far!

Dave

It sounds so you have a good idea which way the wind is blowing on this one. I’m sorry that you’re having such a worrying time. Of course it is natural to want things to move fast but if you’ve had it 12 years, a month or two probably isn’t going to make a huge difference. I say this not because I don’t think you should be agitating to get things moving – in your shoes I would be agitating too – just that if you don’t get anywhere you maybe shouldn’t be wasting too much sleep over a short delay. Good luck with it all, and welcome.

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Hello Dave

Welcome to the forum. It’s a bit of a Groucho Marx thing, a club no one would want to belong to. Or rather, no one would want the criteria that entitles their membership!

Regardless, you are welcome to the club!

Oops, didn’t finish my post and pressed ‘reply’. Dingbat!

Personally I suspect that if you get the tests in and thus your diagnosis (in all likelihood) confirmed within 6 weeks, you’ll be doing quite well in this current world of delays.

You do sound as though you’re taking it all in your stride without too much in the way of :scream:!! Unless that’s just a face saving ‘I’m a big boy who’s scared of nothing’ pose and inside you’re yelling ‘nooooooo!!!’

Whichever, it does sound as though you’ll end up fully diagnosed fairly soon and then the big decision will be which disease modifying drug you take. Have a look at MS Decisions aid | MS Trust What you’ll need to keep in mind (apart from whatever your neurologist thinks is the best fit for you) is the benefits, ie the average relapse reduction rate versus the costs, or the potential side effects.

Best of luck. Hopefully the tests (and their results) will come sooner than you think - it’s always worth asking for a sooner appointment.

Sue

Thanks @alison100 and @Ssssue!

I couldn’t help laugh at your reply @Ssssue as it’s not the first time I’ve heard the internal “noooooo” comment but I am mostly taking in my stride and dealing with each update as it comes - I have a small medical background and a close with RR MS so I think that’s helping.

I decided not to push for a quicker set of tests and while I’m still waiting for a date for my MRI, I’ve had one through for the LP - looks like I’m being admitted as an in-patient at the end of the month and will wait on the ward until I can be ‘squeezed’ in. A friend who works in the local hospital says this is quite common when something’s urgent but the wait list is pretty long.

We’ll go from there and see what happens. I’ve been doing some research on DMTs ready for when these tests are done but need to do more. Now I need to look into the LP a bit more as I read taking a drink like coke in with you can help?

Dave

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The Barts Guide to LP is worth reading.

Your Lumbar Puncture at The Royal London Hospital (clinicspeak.com)

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Thanks for the link to the guide @whammel really useful. I ended up getting lucky and was offered a cancellation LP appointment on Thursday.

Was smooth sailing, the team were great and in and out within 30 minutes. They used a new needle that’s growing more popular to reduce headaches etc. and other than one from me frowning a bit ha.

Just waiting for my MRI date still but have a call from one of the nurses on Wednesday.

Patience proved useful in this respect!

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