May I ask something, and it is a subject Ive mentioned repeatedly. Just to reiterate, I had three brain scans between 2009-2011. The radiologist confirmed in their report that I had brain abnormalities which had progressed, and could be either MS or a brain clot. What is even more confusing was I was told the first two scans were fine. An appointment to see a neurologist was fast tracked, which caused even more worry, but I was told the abnormalities were due to migraines, and an epileptic drug was recommended. The neurologist took nearly an hour to explain all this as though he was being a little over persuasive, and completely refused to accept that ME could cause such abnormalities. I already knew I suffered from chronic migraines and I was already taking meds which did help them. My GP was pretty confused and also wasnt happy when I told her the neurologist accused her of being scan happy with referring so many of her patients! I decided I didnt want to change my meds, and my GP agreed. She even suggested that maybe these abnormalities are due to ME but medicine hadnt caught up on the idea! The other issue is, if you Google search brain abnormalities the first hit is Neurological disorder, and migraine is specifically mentioned there. But in the UK you are diagnosed with CFS/ME based upon NOT having any other attributable physical signs or positive test results which could explain your symptomatology. So if I have been diagnosed with chronic migraines after my CFS diagnosis, surely that supersedes CFS based upon the NICE guidelines? Im not trying to rule out that I have NeuroME, it would make perfect sense, Im just wish to know if I can trip the NHS up with what they think is causing ALL my symptoms if it cant be ME because of the scan results. What about the widespread pain, abdominal problems including a positive gut biopsy result for Colitis, something which was overruled by a GI, wasting/lack of appetite, and balance problems, just to name a few. Can I also ask, has anyone else had any brain scans also showing evidence of brain abnormalities? And what was the diagnosis given based upon those results? Could we also ask around? Surely I cant be the only person diagnosed with ME who has proof of brain scans showing progressive brain abnormalities. i dont know why Ive never asked before, and we can blame my wife for that. Thanks in advance.
Posted on: Fri, 04 Apr 2014 00:16:52 +0000
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