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No contact from MS consultant

I was diagnosed with MS around 3 years ago after tingling in 2 of my fingers, after an MRI and lumbar puncture it was confirmed I had MS, I haven’t seen a consultant in over 2 years as I was 6 weeks pregnant when I last saw someone and just seem to have been forgotten about, is this normal to have no contact until need to see someone? I’ve been having some blurred vision this week so not sure who I should be contacting if anyone or if I just wait for an appointment to come through? Do I go and see my GP or have seen people mentioning MS nurses?

I can’t believe you let 3 years go by without making any enquiries yourself. Nobody is going to care about your health and welfare more than you, so take responsibility for your own health and get on the phone today! Speak to the secretary of the neurologist that gave you the diagnosis. Explain you’ve been overlooked and request an urgent appointment. You could be wasting valuable time.

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Hi Dinkydan2k1,

Welcome to the forum :slight_smile:

There’s lots of lovely people on here that can over you advice and support from having their own experience or knowledge.

I totally agree with what Poppy has said and that 2 years is a long time to have been over looked, sadly this can happen but it is down to you to chase things up as nobody else will do so please phone TODAY.

Take Care.

Twinkle Toes x

Being new to all this how am I meant to know i need to be seen regularly, I was advised unless I have 2 relapses in the space of 2 years I won’t be on any treatment so as far as I was aware I just continued living my life until I had a relapse hence why I have come on the forum to get other people’s opinions! I will phone the secretary tomorrow, I just wasn’t aware this is how things work!

Hi DinkyDan,

I agree that best course of action is to phone neuro’s secretary and ask for an appointment as it is just possible that the blurred vision could be a relapse which, from what I have picked up from the others here, means you may become eligible for disease modifying drugs??

Of course us newbies don’t know how it all works…MS doesn’t seem to come with a manual! I suppose some neuros/areas are better than others.

I’m in limboland just now but am under a neuro at a university/teaching hospital which is apparently a bit of a trailblazer re MS research and treatment, and so far have been treated very well with a follow up appt later this month following hospital admission and positive MRI & Lumbar Puncture results.

I would have thought your neuro would have referred you to an MS nurse - at the very least this would be someone for you to discuss your concerns with. Perhaps a call to the secretary could get things moving for you - it must be scary feeling unsupported and unsure of what to do… good luck! xx

Thanks for the support, it helps when people are supportive rather than advising I should be taking care of my own health which I obviously know however with 2 very young children and feeling fine in myself how would I know I should be chasing up appointments I felt being under a consultant it would be their role to send me appointment information x

Hi

I quite see Poppy’s point. While you probably should have been referred to an MS nurse, even if you couldn’t take DMDs due to pregnancy, ultimately you have to get yourself geared up to contact people to help you out.

So, your first point of call is presumably the neurologists secretary to ask how to get in contact with your MS nurse. And probably also to ask for an appointment with the neurologist.

Basically, you are eligible for a DMD if you’ve had two clinically relevant relapses in the last year. You might find your neurologist is more proactive than that, so without such evidence, you might be able to access a DMD. If that is what you want. It does sound like thus far you’ve been only lightly touched by MS, so if you can get on a DMD now, it would perhaps be a good plan.

Best of luck.

Sue

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Dinkydan. I’m sorry you didn’t find my reply “supportive”. However, with 2 very young children I would think it even more imperative to look after your own health. MS isn’t like getting a bad cold. It isn’t going to go away and while I truly hope you stay as well as you feel now, you may know from reading on here, (or from having researched ms) things can change. If you are able to get as much information as possible about the various DMDs available and be proactive, you will be doing yourself a favour. When a relapse happens it can cause irreversible damage, causing any form of disability, major or minor. You probably know that the use of a DMD is to slow progression and reduce relapses. In my mind, time is everything. In the NHS system, I am sorry, but you are just a number. A statistic. I have worked in the NHS. I wouldn’t rely on the “role of the consultant” to send me appointment information. As I said, nobody is going to care about your health more than you! I truly wish you the very best and hope you see the neurologist soon.

Dinkydan,

We were being supportive of you but also offering you advice due to our own experiences and knowledge.

You did ask for other people’s opinions.

Twinkle Toes x