Hi All, I haven't posted here for a while and I was hoping to have some news by now but still no further along. If you don't mind I'll summarise what has happened so far...
After being unwell since 2004, I was diagnosd with ME/CFS in 2008 and had to give up work as I just couldn't carry on and was under a lot of pressure from HR.
In 2010, after several requests, my doctor finally agreed to refer me to a neuro and I had an MRI which showed (January 2011) "subcortical white matter changes, two in particular. Changes like this can somtimes be seen in people with very mild MS. However, just having two lesions on their own does not make a definitive diagnosis." and in a further letter (September 2011) "Somatosensory evoked potentials did not show an abnormality, but MRI scan has shown a couple of white matter changes which were consistent with demyelination. However it did not satisfy Barkoffs criteria. For that reason I did offer to do a lumbar puncture".
I was very confused because I couldn't find anything about (what turned out to be) the Barkhof criteria, which it transpires was superseded by the McDonald criteris years ago.
After calling several times about having my LP, I finally went to see the neuro in Feb 2012 and he changed his mind and sent me for another MRI (April 2012).
I've been chasing my results for weeks now and just received a letter this morning which was a copy of a letter to the consultant radiologist:-
"I am sorry to disturb you again. Would you please have another look at this womans scans. She has fatigue, pain in the neck and a lot of it which appears to be muscular skeletal in origin. However she did have white matter changes on the brain scan and a repeat scan has been performed on the 3T machine. I thought that the appearances are still not specific and I will be grateful if you will have a look to see whether you think that this satisfies Barkhof criteria to make the diagnosis".
My neuro's speciality is pain/migraines but I did notice that as of couple of months ago, he was listed on the society's website as an MS specialist.
I'm really worried because he's now not only trying to diagnose me with an outdated criteria but also seems to be asking the radiologist to diagnose me.
Sorry this is so long-winded, I just needed a good 'toot' today as this is really getting me down.