Abnormal brain scan

Hi I was diagnosed with ms in 1999 only when the scan results came back they showed severe hydrocephalus so the brain is not visible. I now have a vp shunt to control this, but I have had episodes where my balance gets worse with tingling and spasms which were put down to hemiplegic migraines. I have spent the last 6 weeks in severe pain with my eyes two visits to optician tells me my muscles aren’t working together still pain with prisms put in glasses and paler discs than he would expect to see with hydro so has referred me back to hospital. I have had a full spinal and head MRI which neuro say is the same no change, but my legs have been jumping about on their own, my teeth are chattering continuously my legs are throbbing and I’m thinking it must be an msattack

So does the neurologist still think you have MS jackievix?

It sounds like they made a diagnosis, then maybe weren’t sure. Did you have an LP? Or was it impossible because of the hydrocephalus?

If you have had a diagnosis of MS for all this time, have you ever been told whether it’s relapsing remitting or progressive?

Have you had any other episodes that have been clear MS relapses?

It sounds like you have a very complex neurological set of problems, hydrocephalus plus hemiplegic migraines plus potential MS. So it would be beyond anyone on this site to unpick your symptoms.

It seems to me that you need to ask your neurologist what they really think about you and MS. Unless I’ve completely misunderstood your post and you’ve had many relapses over the last 17 or so years. In which case, I would expect that you could get some assistance and guidance from an MS nurse.

Sue

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Hi thank you yes many episodes but because of the hydro they dealt with that and always assume everything is down to that but as this attack started while admitted to hospital it alerted them to scan and am now back under ms specialist. Has anyone else had diagnosis by lumbar puncture and clinical tests or has every case confirmed by MRI

Oh forgot to say I have had a chat with the ms nurse and ms specialist will be contacting me very soon

Well, that’s good to know. It does seem that maybe you should be pressing for more information about your MS. And only a neurologist can help with that, although your MS nurse should help too.

Sue

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Thank you sue dreadful throbbing and pins and needles GP has received very detailed report but neuro still awaiting more results from hydro surgeon yes is complicated I know so now back on carbamazepine and waiting