So I have inflammation in my mid brain - but my problem is the cause and then I can be made better. The consultant has tried azothiaprine and methotrexate, and now it's cyclophosphomide pulse. He is baffled as well - the tests show no abnormalities except an area of inflammation which isn't enhanced on the MRI. I've had both PET and CT. If the symptoms would go away I could go back to work - I have an essential tremor, double vision and balance problems - like I'm drunk - but I'm not! - Please could someone explain this cos being drunk for an evening is bad enough but for 18 months! Does anyone have any other suggestions - we explored ms at the beginning and I have also had a gastroscopy looking for something. The consultant says that I should be patient and see what the cyclophosphamide does. He doesn't want to do a biopsy cos it's dangerous - bleeds etc. anyway it might not be helpful.
Thanks for your answer - no infections. I haven;t had a diagnosis just the only test that has shown anything has been the mri scan, no different with enhancement. the consultant rang me to see how I was and told me the last blood terst and lumbar fluid had oglioclonal bands. I've stopped taking propanolol because it didn't make any difference, and my steroids are down to 10mg (been stepping them down weekly since the last pulse)
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