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Neurologist appointment

I was looking for a little advice I have had a mri of my brain in November 1 week later a lumbar puncture I was told by neurologist to Phone this week to book appointment for 6 weeks time only to find out that the neurologist already booked me an appointment for 2 weeks time they have said there’s a letter ready to go out to me but can’t give me any details on the phone. I’m now scared it’s going to be bad news I have only just got my head around the possible diagnosis of rrms. Has anyone else had appointments brought forward like this? Sorry it may seem so silly to be so worried but I just need some kind of possible reassurance

janine x

Hi Janine,

There’s no need to worry. Appointments are often brought forward when someone can’t make theirs.

Whatever the outcome of the neurologist’s findings it won’t change you. You’ll still be the same person with the same symptoms. What the neurologist will do is discuss the best way of dealing with them.

And, if you do have RRMS, there are drugs which can control the disease and symptoms.

Come back to this forum at any time. You’ll find a lot of experience, support and understanding from the contributors. There are a lot of people here who’ll have been where you are and know what it’s like.

Regards,

Anthony

Thank you Anthony

I feel a little reassured. I’m now trying to find information on which DMDs are the best option I suppose they effect people in different ways it’s such a complex thing and I just feel blinded by it all so much to take in its good to know there’s people like yourself out there to talk to. I have a brilliant family but I feel like they don’t understand and I feel alone.

janine x

Hi Janine

As Anthony said, the bringing forward of the appointment is probably just due to cancellations or extra clinics being put on. So don’t panic about the speed.

You’ve said you’re looking for information on DMDs. Obviously it is a little premature, but a good place to look is https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Let us know what happens at your appointment.

Sue

Hi Sue

I will let you know how it goes with neurologist

thank you for the link I will have a look

janine x

Received my letter from neurologist today my lumbar puncture has confirmed mild ms so that’s why I got this earlier appointment to discuss further it’s a strange feeling because I’m relieved to now know 100% what’s wrong with me and I have a fantastic group here to talk to so I don’t feel alone

janine x

Hi Janine

‘Mild MS’??? The neurologist doesn’t know exactly how good or bad your MS is likely to be.

It’s a bit like saying, we had to chop a bit of your leg off, but only as high as the ankle so far.

But it’s better than saying ‘highly active’.

As far as I’m concerned, being diagnosed with MS of any kind is a kick in the teeth. But at the same time, it can come as a relief to know that your symptoms have a cause and you can now get some DMDs to make sure it stays ‘mild’. And a good DMD can in fact do that, so don’t let my ‘chopping your leg off’ analogy frighten you.

And don’t let the neurologist fob you off by saying ‘it’s only mild, so we’ll hold off on the DMDs until you have another relapse’. Your aim should be to not have any further relapses. So starting a DMD is the way to prevent them.

And we will be here when you start to get angry at the diagnosis as I’m sure you will at some point.

Sue

Hi Sue

he wrote on letter the lumbar puncture results confirmed the multiple sclerosis and that like he said in last appointment it was mild and there would be no intervention he will discuss with me more at next appointment. I’m worried that he won’t give me DMDs As like you say I don’t want it getting any worse before they decide to help me . I will go in with my mum and husband and if I forget anything I know they will ask for me I will definitely make sure I ask about DMDs will let you know how it goes

janine x

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I agree with Ssssue, in some ways. I was told almost 13 years ago I had a CIS (clinically isolated symptom) with optic neuritis after my scan confirmed lesions (3 I think) and I was sent away with a leaflet and an appointment for 12 months. However, 3 months later I had another big relapse and 2 weeks in hospital. Another scan showed more lesions and it was confirmed as RRMS despite a negative lumbar puncture! My symptoms were sensory so was told hopefully it would lead to a milder form of MS. I was discharged from hospital in 2005 but with no treatment plan and offered no options, just wait and see. Over the next 10 years they were right, my symptoms were milder, but I was never offered dmds until I pushed and asked for it after a biggish relapse again. I also asked my gp to check my vit d, which came back very low. I insisted on an appointment and have been on dmds for 2 years now. But now have issues with my legs which, if I were on dmds earlier might have slowed the progression. I know I have been lucky but nobody can tell how this disease will progress, everyone is different, but the rules have changed since 2005 and I believe treatment is offered from diagnosis. Do your own research and listen to what your neurologist has to say and make your own decisions. Good luck with your appointment & let us know how it goes. Good luck Sharon