Posted almost 1 year ago now! Back then I was waiting for am MRI on my knee, ordered by the musculoskeletal team to rule out arthritis.
After this, MRI came back clear and was then referred to physiotherapy, who then referred me for hydrotherapy. Hydro was the worst, as it made my entire body stiff, so had to stop after 4 sessions.
Was then referred to rheumatology who suspected that I may very well have fibromayalgia. But I still had symptoms that couldn’t be explained by this, so was referred to neurology.
After 9 months after my doctor started a referral to neurology, I finally got an appointment. The first doctor I saw was a locum, who ordered an MRI (without contrast) of my head and neck. He was lovely and was concerned about my field of vision.
After waiting a few weeks for the result, the next doctor on my case stated it was “basically normal”, but then stated seeing “2 tiny non-specific frontal lobe high signal intensity foci”. Then, rudely in my opinion, stated they only arranged a follow up appointment after this because the radiologists had told them to…
When I finally saw yet another neurologist, she rudely suggested that it was all in my head and that my scan was completely clear. Rightfully I said “but could I not have lesions on my spine?” to which she stated that 100% of all cases show lesions on the brain (something which I Googled shortly after, and low and behold around 20% of MS patients only have lesions in the spine). She recommended I take beta blockers and magnesium. I refuse to take the beta blockers as there’s nothing wrong with my heart, but I have taken magnesium and it has aided with some of the symptoms (unsurprising when I found that MS patients are usually advised to take it to help with symptoms).
She has also now referred me back to rheumatology, despite me telling her that they were the ones to refer me to neurology in the first place.
I write this today after trapping a nerve in my neck on Friday, having to call out a paramedic and now take various painkillers due to muscle spasms. I’ve also been told to take 2 weeks off work.
I asked my GP today if she could refer me back to neurology and she basically said that rheumatology will have to refer me back… which could be months away as I’m now awaiting an appointment for them.
I have seen over a dozen consultants over various departments and keep getting bounced around like a yoyo. I have also visited A&E 6 times in the last year and a half. I’m sore, fed up and losing the will. I was advised to see someone privately a year ago and its starting to look like my only option.
I guess I just want to know this is normal and that I’m not the only one who has had to wait for so long etc. I can’t really afford to go private but I also can’t really afford to lose my job…
Does anyone else have a similar story to me? Have you had to jump through 100 hoops? Have any of your had clear brain scans, but still get a disagnosis?