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Recently diagnosed after brain biopsy

Hello, I’ve just been diagnosed with MS following two plus years of tests and uncertainty.I thought I would say hello and I’m interested to hear if anyone else here went through the biopsy process to get their diagnosis? It all started in 2011 when I noticed my left hand fingers were losing coordination. 9 months and after an incorrect diagnosis of Essential Tremor then loss of use of my left arm due to the severity of the tremor, I had an outpatient MRI and was very quickly admitted to hospital for nearly 3 weeks for tests including CSF (over 50 things tested for in the end according to the discharge report), but I was still no closer to a diagnosis. Due to there being a big ? over it being a tumour, I was sent to the local neurosurgical team who felt that due to the main lesion being inoperable if it were a tumour, there was no point in operating and it would be safer to ‘watch and wait’. 6 months later and I had been referred to the top people who felt that it could have been Gliomatosis (tumour) or inflammatory condition, and because of the uncertainty but potential severity, a brain biopsy was the next step. So, I had the biopsy which although obviously not enjoyable, went well and showed clear inflammatory demyelination. A follow up VEP has sured up the MS diagnosis and I’m now moving forward with a very good MS specialist. I’m due to start Copaxone in about 2 months and I’m learning lots about the other ways I can help myself. Simon.

Hi Simon, well you have been through a very traumatic time on your journey to an MS diagnosis.

Well done for coming out the other side and sounding so together.

One good thing is that the medical profession have been on the ball with your investigations and treatment.

Good luck with the copaxone and welcome to the forum.

luv POllx

Hi,

no I have not had a brain biopsy or heard of anybody else being diagnosed via one. I am glad you have your diagnosis though.

Catherine

Hi,

Thanks for the replies. I thought I was a bit of an odd case!

Simon.

Hi simon, I am trying to figure out what is going on with me at the mo! I was told I may have ms when I was 23 then when I was 24 I was told my inflmation was actually a tumor when the results of the biopsy came back there was no sign of a tumor or demyelination so very confused as I have all the classis signs and symptoms of ms?? But well done for getting through it, I’m still undergoing therapy for my brain biopsy as the docs told me it was terminal. Haha I’m still here yey xxx

Goodness, what I time you have had. Thank Heavens it is only MS! I am sure that your case was of great interest to the various specialists and that you have had the benefit of a lot of eminent people’s big brains, but being an ‘interesting case’ is a bit of a mixed blessing, by the sound of it…

I think that those of us who presented with garden-variety MS symptoms that a child of 5 could have dx-ed are very fortunate!

I am glad that you have a firm dx, and hope that the Copaxone does a great job for you and that you have now entered much calmer waters.

Alison