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CIS diagnosis 4 years late

Good evening, I have just seen my neurologist for the second time in 4 years and it seems like he just doesnt care. The back stort to my problems is as follows, in 2014 i woke up one day paralised from the waist down, lost control of bodily functions and spent 6 weeks in hospital., during this time i had multiple xrays, ecgs, a full head, spine and back mri and a lumbar puncture which i was told all came back fine. I was discharged when my symptoms aleviated and told they could never find a cause. Fast forward to 2017 when a nurse told me at a routine appointment i had Cauda Equina that was diagnosed in 2014, i quized her about it but she wouldnt say more and told me to see my GP. My GP told me she was wrong and that i had actually been diagnosed with GBS. After more tests another dr reviewed my tests and said i actually had MS. Full blown panic ensued. I was refered to a neurologist who back in May this year told me that actually i had been diagnosed with CIS, he ran reflex tests which showed as slightly weakened but nothing too bad, he checked all the results, the MRIs showed lesions and the lumbar puncture showed proteins present which coincide with MS and therefore i had CIS. He ordered a new MRI which i got the results from and this showed that there have been no new lesions developed since 2014 but the original ones are still there. He tried to discharge me but i protested and he agreed to review me in 12 months but that i could ring his secretary if i had a relapse. Since 2014 i often have problems with weakness in my legs, difficult standing for periods of time, back spasms and pain and lately needing to urinate more and more frequently. My anxiety about the whole thing is getting worse and i feel like im just not getting anywhere. What should i do? Thanks Lordy

Bloody hell. That’s a nightmare!! Can I just clarify that all those tests you had in 2014 that you were told were fine, actually were consistent with a diagnosis of ms? You are in desperate need of some proper expertise and some consistency. If I was you, I would request a copy of the results of every test and scan you’ve had in relation to this situation. (The letters sent to gp from hospital are not sufficient). Make a subject access request for copies of results and scan images, it’s easily done. I would then gather all this info and ask your gp to refer you to an ms specialist. You can request someone in particular or a certain hospital, that’s what I did and my gp happily referred me because like you I was not happy with the neurologist I was already with. If you can afford it, I would seek a private appointment as you will be seen quicker. Explain everything and armed with the tests you’ve had and the results of them, allow him or her to to try and definitively tell you whether you could have ms or not.

Maybe you do, maybe you don’t. But at the moment you are getting a proper naff service. You’ve been told you have ms/cis/cauda equine, gbs. Well which one is it?! If you would like me to pm you with a recommendation for neurologist, let me know.

Hello Lordy

I totally agree with Cherry Tree that you’ve been very badly served by the doctors and nurses you’ve seen (I gather there’s been more than one, not only the neurologist).

However, seeing a private neurologist isn’t really going to help that much. In order for a private neuro to review all your previous test results as well as do a proper neurological examination and come to a reasonable conclusion isn’t going to be cheap. And ultimately, you’d have to go back to the NHS for further care and certainly any disease modifying drugs (they’re fearfully expensive). Although getting a referral to an NHS MS specialist isn’t a bad idea. Trouble is, your GP isn’t going to necessarily know where to find one, and referring you outside your local CCG (Clinical Commissioning Group, replaced the old PCTs) probably would be outwith their remit.

So, my thought is a big old complaint to your PALS (Patient Advocacy and Support Services) unit of your local hospital. Tell them the history of what you’ve detailed to us. They should be able to come up with a solution that has as its end you in front of a neurologist who will have reviewed all your history and can make a determination of what’s wrong, and hopefully come up with a treatment regime that will help. Or at least a proper diagnosis, if it’s CIS or MS, then an MS nurse. And a referral to physiotherapy.

Sue