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@LaurKay 

EditedLast reply

LaurKay

Awaiting diagnosis

Just wondering if anyone can give some help or advice. I've been suffering from MS symptoms since during lockdown (as far as I can tell). I recently lost feeling in my face (Feb this year) and since then have been able to track and attribute seemingly random symptoms that often baffled me e.g. Fatigue, brain fog, shooting pains in arms, severe migraines/headaches, MS hug and itching/tingling limbs. I've had a lumbar puncture and 2 MRIs of my brain and spine (incl. 1 with contrast) and they all indicate swelling/scarring and O bands in my spinal fluid. However, my consultant said she is 'happy to write it off as CIS' in her final diagnosis. My family and I are not convinced, and I have presented my other symptoms (ongoing for at least 3 years) to her but the only numbness I've experienced is that which is in my face (still present). We are considering going privately for a diagnosis, but since this is costly I wondered if anyone else shared a similar experience of diagnosis under the NHS, or if anyone has gone privately for a diagnosis? Thank you in advance.
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@Lowlander
@Lowlander
 

@LaurKay Hi you could ask your GP to refer you to an other hospital. CIS diagnosis should be band. You have met the criteria of the McDonald criteria https://mstrust.org.uk/a-z/mcdonald-criteria

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@Josie999
@Josie999
 

@LaurKay totally agree with @Lowlander . I was told (during lockdown) by an excellent non-MS neuro that I definitely had MS, and had old damage. He advised I needed a DMT ASAP. I then went privately to an MS neuro who decided to diagnose CIS, which was complete rubbish, as we both knew I had MS. It was a battle to get diagnosed in which time I relapsed (leaving me with problems I may not have had if he had acted quickly). If you can afford to go privately to get a second opinion I would do that ASAP and then you can be put back in the NHS to discuss starting a DMT (if your second opinion diagnoses MS). If you need a DMT the faster you start the better. Not all neurologists are equal so it may be worth getting advice on who to get a second opinion from, feel free to message me if you want advice for the London area (I moved neuros and had some good advice from the MS Society on which centres had reputations for early aggressive treatment, it may be worth asking them and also see which neuros in your area are involved in clinical trials such as Star-MS trial, which you may be eligible for as they are now recruiting newly diagnosed patients). Take care x

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