Last reply 3 months ago
Neurologist appointment

I need some advice please! I have been diagnosed with MS in March 2019. I was just told I have it, but not what kind of MS it is. I have an appointment with Dr Oliver Lily (MS Neurologist) and I just wanted some ideas on what questions to ask him. Thanks x

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peterfrancis
3 months ago

@selina_abdul_manaf

Hi

I’d ask the obvious one first, whether or not he can tell you what type of MS you have.

Have you had an MRI Scan yet?, if not ask about having one.
Same goes for a Lumbar Puncture, these will help identify which type of MS you have.


lightningduck
3 months ago

Most likely RRMS (Relapsing-Remitting Multiple Sclerosis) simply because it’s the most common kind and you would probably know if you had PPMS (Primary Progressive)


selina_abdul_manaf
3 months ago

@peterfrancis I’ve had 3 MRI scans done on head and spine and one of them used GAD and they found 2 active lesions, the symptoms and my family history all indicated to MS. The general neurologist said I might not need a lumbar puncture, as they have found enough evidence. I’m just really nervous about the appointment and I don’t know what to expect. @lightningduck I hope it is RRMS but I keep getting worried they are going to tell me something different at the appointment.


vixen
3 months ago

Hello @selina_abdul_manaf. You could maybe ask about the level of service, for example, is there an MS nurse? How often can you expect to be monitored through hospital appointments? Try to make notes, or take somebody with you who can make notes. It’s nothing to worry about, don’t forget the neuro is on your side x


happy_wanderer
3 months ago

Hey! It’s completely normal for your thoughts to be a bit all over the place. I had the same thoughts just before I went and I wrote them all down. I still have the list. Hope it helps:

How to manage work/ sick leave
Medication options
What to do if you get side effects from meds
Managing symptoms
Physio?
Therapist/psychologist?
Next appointments with neurologist and MS nurse support
Travel/ car insurance implications?
Proof of diagnosis for insurance/ benefits


wjgregg
3 months ago

Dear @selina_abdul_manaf,

Of course it is a difficult, and frightening, time. I hope I can make things a little better for you by letting you know that you are in great hands with Dr. Lily. He is my neurologist, and I have always found him to be thoroughly decent and professional. In addition, he is a Multiple Sclerosis specialist rather than a general neurologist (of course I mean no disrespect to them). He really knows his field, and is just top notch.

I hope, and trust, that all goes well for you.

Good luck, and best wishes.

Jon


selina_abdul_manaf
3 months ago

Thank you everyone for the advice! @wjgregg are you seeing Dr Lily as a private or NHS patient? I have been waiting for 2 months for this appointment and I have been reading up on Dr Lily and he has had some really good reviews. Can you remember any of the questions he asked you? I just feel like I will go blank when he asks me and I rather have some ideas.


wjgregg
3 months ago

I receive an infusion of Tysabri every month, at the Leeds General Infirmary. I’ve been going there for around 20 months. He will tell you what sort of M.S. that you have, and the best treatment for you. My particular brand of R.R.M.S. was classified as “rapidly advancing”, so he recommended Tysabri which is a “top line” D.M.T. although not without its risks. I have no problems with needles, so was happy to receive infusions. You won’t be asked to make a decision straight away as to which D.M.T., if any, you want. You will have time to think about it, after he has explained the pros and cons of each to you. I guess your attitude to risk, needles, age, symptoms, whether you’re working (effect on work/ability to work if you do), whether or not you are considering starting a family are all relevant to your decision. There are doubtless many more factors to consider. You will doubtless think of many questions ten minutes after you leave the consultation room… Don’t worry, Dr. Lily is very approachable and I’m confident that he would answer any further questions you have if you contacted him afterwards.

If you want to talk further about it, drop me a friend request and we can talk privately.

Best wishes,

Jon


lightning87
3 months ago

I wish there was some way they could really tell what kind of MS you had and what your future may he like but there is no telling. I would very much imagine you have RRMS and hopefully with drugs, it will keep it at bay for quite some time.

Try not to worry, although I know how hard it is as I had the same period of worry as you did, but no matter what you are still you and you will see strength in yourself that you’ve never seen before.

All the best x

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