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All seems a bit out of sync

Hello

I was recently admitted to A and E with double vision and unsteadiness and apparently an mri suggested signs of MS…(3 lesions in different ares) I had never even considered ms I thought it was BPPV…a lumber puncture and bloods were taken and sent off and I was sent home on 13th September.

A letter came through for a meeting with the MS neurology dept at Canterbury hospital for 2nd October.

However I don’t have any results and I am not sure where they will go or who will get them. My GP doesn’t have them and they said it could be 6weeks.

Isn’t it too early to be referred, or will they just conduct more tests once there?

I understand you don’t know the answers to all the questions but what would be normal practice?

The problem with MS is that it strikes us all differently. And the big problem with MS diagnosis is that it’s equally confused. Every neurologist does things according to his or her own rules. Each hospital / local CCG equally have their own rules.

Diagnosis of MS is supposed to follow the McDonald Criteria (nothing to do with burgers). Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria

Because we are all quite different, it may be that you are about to be diagnosed with MS. Or that you are about to be diagnosed with a ‘Clinically Isolated Syndrome’ (https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis ) Or that you will be referred for further tests. Or that the neurologist will want to ‘wait and see what happens next’ and maybe arrange to do a further MRI in 6 months - or whenever.

Sadly, all this leaves you a little in the dark as to what will happen when you eventually get to the appointment with the MS team at Canterbury. At least that’s only next week.

Let us know what happens then.

Sue

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Hello thank you for your reply. I didn’t know about CIS so will find out about that. I is a strange thing that I don’t think I have many of the other symptoms. If my brain scan had not shown lesions I don’t think anyone would think I had it…only recently have I had issues so maybe it is a one off. I doubt I will know anything so soon and the appointment might well be a waste of time but when I need one I will be waiting months! I cannot complain they have been incredible so far in helping me. Thanks again Sue and best of luck to everyone out there still waiting.

Looking at my notes the mri found 3 areas with suspected lesions suggestive of ms. The second scan with dye showed none of the expected enhancement. Does this mean they are old ones and my latest double vision is nothing to do with ms? Or the old ones could just be age or migraines. Surely if the double vision and dizzy was ms it would be glowing right now…anyone had anything similar.?

OK so diagnosed swiftly yesterday. Now need to choose my medication. Feeling overwhelmed…

I’m not at all surprised you’re overwhelmed. It’s all happened very quickly for you. I’m never sure whether it’s better to have a very fast first symptom followed by diagnosis, or a slower diagnosis, with months or longer in ‘limbo’, just waiting to see what the diagnosis will be. Ultimately though, I don’t really think there’s a good way to learn you have MS.

Don’t expect to assimilate it all at once. It’s something you never anticipated and you are bound to have wildly swinging emotions about it. From anger to depression with fear and worry just to complete the range. Personally I’m rather fond of furious anger (still, after more than 20 years)!

It’s not bloody fair that this thing has happened to you. It’s utter crap, MS. And now you’ve got to consider taking a drug that you never planned upon.

You should be assigned an MS nurse who can help with some of the decisions you have to make. S/he can help with any left over symptoms you have and any future relapses plus questions and thoughts about the disease and the drug therapies.

If you do have residual symptoms, you could get a referral to a physiotherapist to help get past the symptoms. It’s a really good idea to get and stay as fit as you possibly can regardless. No one ever gave me that advice (to be fair this forum didn’t exist, nor did any others), and if they had I don’t know if I’d have really understood why. The point of getting a strong body is to give you a really good chance of defeating relapse damage to your system. The stronger your ‘core’, the less disabled you’ll end up being in later life, just in case you have more relapses.

Meanwhile, you need to think about Disease Modifying Drugs (DMDs). Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The point of a DMD is to reduce the number and severity of relapses. All the possible drugs are listed on the Decision Aid, just keep in mind you won’t have a completely free choice. The neurologist will have decided how ‘active’ your MS is and that will inform the decision as to which drugs you have a choice of. Equally, you may be happier with a daily pill rather than an injectable or an infusion type drug. So your choice may be limited, but you do still have choice.

All drugs come with benefits (with DMDs it’s average relapse reduction rate) and costs (ie. side effects). The better the relapse reduction rate, the more serious the potential side effects. But that doesn’t mean you should opt for the lowest relapse reduction rate in order to avoid side effects.

Personally, I think hitting the MS with the biggest weapon you are offered the choice of is a good plan. The side effects may never happen for you. And if they do, you can always change drug.

Best of luck getting your head around the diagnosis and your drug choice. Let us know how you get on and if there’s anything we can help with.

Sue

Thank you for taking the time to respond. I am back at work so will probably process it fully at the weekend. I will spend some time looking at options and make the dreaded call to the ms nurse. Another one for their books.