Hi, new member here. I have joined as I am at a crossroads with my life and illness. Around 9 years ago I was diagnosed with Chiari Malformia and Syringomyelia after years of diagnosis by both NHS and private of a “trapped nerve”. It took around 4 years to get them to agree on an MRI which immediately showed the syrinx and the chiari. After a few years of relative stability with regular checks, I started to have longer periods where symptoms persisted, to the point where I had a 24/7 constant headache (migraine like, and back of skull base), this is when I was sent for decompression surgery after an MRI showed some further issues. On that MRI scan around 5 years ago, it also showed that multiple lesions had formed on the brain (around 7), which concerned my neurologist enough to refer me to see a specialist on them.
After surgery, and being told there isn’t much the Chiari specialist will do now, I was referred to an MS specialist. After seeing them a couple of times over a couple of years, and despite MRI scans showing increased number of lesions every time as well as symptoms aligned with MS becoming more persistent and continuous, they informed me that they were happy not to see me again unless symptoms got worse, and that they were unsure whether symptoms were based on the chiari or anything else, basically not committing to a diagnosis. At this point I gave up, both with the Chiari, neurologists and with the NHS in general, I felt like I had been swept aside completely.
Roll on a couple of years, and I am at this point where my symptoms are daily, my life is a wreck, I can’t face the outside world, and without my family and wife, I’d have no reason to go on. I got back in contact with the neurologist, and after a struggle, despite saying they would see me no problems if there was any changes, I have an appointment a week today, after a recent MRI.
Sorry for the whiny long post, I do apologise, and I have not gone into the symptoms as it would nearly triple the length of the post, but I want to ask if anyone has had something similar happen. I could be a hypochondriac on this, but I feel like I am not getting a diagnosis solely based on a separate issue/condition.
Once again I apologise if this is too long, or that it is in the wrong place.