I had an MRI scan back in October that showed demyelination. I have since had a lumbar puncture and currently waiting for another MRI to confirm diagnosis. Really struggling with the limbo of not knowing what’s happening, while also experiencing symptoms. Just feel so in the dark and feel like there’s not enough support for people in this stage. Anyone else relate?
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Very much so, although it’s been 25 years since I was where you are now. In my own case the dx was a formality in the end - I could see the way the wind was blowing - but even then it’s a real moment when it comes. Looking back, I’m glad it wasn’t a big surprise, but whatever is happening the wait in limbo land is tough. I really feel for you.
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I’m pretty sure that all of us recognise the feeling of being in limbo as we wait for the wheels to turn and to be given a diagnosis. It is a horrible period.
Can I suggest that you use this time to read as much as you can about MS website of MS Society and MS Trust are useful) and ask folk on this forum any questions you might have . Also have a good look at the range of Disease Modifying drugs - at some point on diagnosis your Neurologist or perhaps MS nurse will offer you a selection of drugs to choose from each with its pros and cons- there is quite a range especially when compared to the three drugs available when I was diagnosed.
I used this time and the period after confirmation of diagnosis to look at things I could do to help myself I.e in addition to taking my drug. I’m quite a follower of ‘Overcoming MS ‘ website and books. The recommendations aren’t going to cure or stop MS but through exercise, diet and meditation/ mindfulness help keep me as fit and healthy as possible and sort of reduce the worst effects of MS
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Thanks for sharing Alison. This is exactly how I feel, I know what’s coming but it doesn’t feel like I can make peace with it until it happens. Such a unique experience in every way, no one teaches you how to deal with these things!!! I hope you’re doing well x
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