I’m not sure I even have a question to ask but wanted to put my words down for the first time. It’s been 3 months since I had my first MRI (spine) and had my second MRI (brain) a month ago. I’m due a lumber puncture, blood tests and another full MRI in a couple of weeks for a hospital day visit.
The NHS have been brilliant but it’s not very joined up. My first scan was private as my symptoms were so bizarre and I was really worried (I had a PPI refund so chose to invest it in me and am glad I did as it has speeded things up a little).
My neurologist visit was great, diagnosing CIS on the basis of this one MRI I’d had. I am not even sure she’s seen my more recent brain MRI as the results went straight to my GP following an earlier referral (confusing). I went for a drug review with my GP last week only to be given my MRI results (which show multiple lesions, a number active). It knocked me for six as wasn’t really expecting it. I originally thought I had a trapped nerve, but at least I’m not imagining it all.
My GP said MS is now highly likely based on the MRI reports. I had an emotional meltdown for a couple of days but am back on track again (for now anyway). I’m on Pregabalin for some of my nerve symptoms but am not sure how long I need to take them – the idea of being on some of these drugs long term is a bit scary though know they are necessary (and this has really helped). In the past I’ve not even taken many pain killers or even suffered very much with my health. This has made it more of a shocker for me to take in I think.
I have the lumber puncture next week which I admit I am really worried about. I wondered what others’ experience of this has been?
After these tests, I wait until the end of June for my next neurologist appointment. It all seems to be a long time but the one thing I am learning is to let go and be more patient. I’m grateful for any insights you may have about managing yourself during this weird period of limbo. I appreciate that some people have waited years to be diagnosed or even be considered for tests, so am lucky in that respect.
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