A bit disappointed

So I had my first ms specialist appointment. It wasn’t a great experience. No chance to ask questions. I’m going to be sent for a further MRI with contrast this time and a LP.

She asked me about symptoms and I named some, but also said that I am unsure if all symptoms I have are MS related and went on to mention two specifically. She didn’t given me an answer.

At what point will I get to ask these questions?


Hi Foxy,
oh dear…it is shame you werent offered the chance to ask questions and receive answers. That is how it goes when I attend appointments.

But perhaps the neuro wants to get the results of your next MRI and LP before saying anymore.

Hope it isnt too long before you get to know.

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Looking back on your previous posts it looks as if your general neurologist referred you to the MS specialist. My guess is that this MS specialist is wanting further information from a new MRI scan and lumbar puncture to help reach a definitive diagnosis, that fits the MS Mcdonald criteria and then consider appropriate treatment based on those results.

Communication is often very poor with neurologists, it seems. Hope your wait is not too long for the scans and lumbar puncture. It was quite a quick turn around (by NHS standards) from your genral neurologist appintment to your MS specialist.

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Thank you for your replies.

Yes Bouds, I look forward to the day I can actually ask questions and feel like a participant!! :joy:. The first gentleman I saw was totally lovely and had all the time in the world, but I couldn’t think of any questions I wanted to ask at that time.

Ziola - when I originally looked up the Mac Donald criteria, I did fit it. I have new and old lesions, one on my spine and several in my brain, but I see the criteria has change somewhat. The MS specialist has confirmed that I do have it and that Oct 2020 was a significant relapse, but still wants further tests, including extra blood tests.

It was just that when she asked about symptoms I said it wasn’t clear for me and that somethings that I have I’m not sure are MS, but she didn’t enlighten me any further. Fingers crossed that will all come sooner rather than later.


I forgot to add that I’ve read some people are needing MRIs etc when deciding treatments, so maybe that’s it?


Hi again. yes, the usual route to diagnosis is via MRI readings. Bit, as in my case, they were not clear.Boudsx

Yeah, I just thought two so close together (first Nov) was a bit weird when the first one showed the lesions in two different places (spine and brain) and two different levels (old and new). Oh well. If it gives them an even clearer picture :woman_shrugging:. I don’t have any choice anyway so I guess there’s no point moaning. Xx