Progressing diagnosis but in denial!

New diagnosis and before diagnosis
1

Really keen to hear any thoughts on my experiences and if I’m headed towards a formal diagnosis. In 2020 I was diagnosed with what they thought had been a case of ON (although they couldn’t confirm) via the eye clinic. My vision never fully recovered unfortunately but with both eyes I can see ok. I also had a brain MRI where they found a few old lesions and T2 damage. Neurologist offered a lumbar but my husband and I were about to start a round of IVF so I declined since I was well and he told me a few things to look out for. In 2023 I experienced the fizzy sensation of a trapped nerve in my back and a warm sensation at either side of my lower back that came and went. I informed the neurologist but by the time I got an appointment these issues had long passed. I’m now waiting for another brain MRI and this time they’re taking a look at my ‘cord’ as well. Neurologist said he ‘strongly suspects’ MS and has already been talking about DMTs but I remain unconvinced because I’ve had so few symptoms in a long period of time. I also suffer with a bad/tight back and found that the trapped nerve symptoms were relieved when I went for regular massage. Maybe I’m just in denial but I’m hoping there’s an alternative here, in spite of lesions and a possible case of ON. I’m 32 with a gorgeous 13 month old little boy and so hopeful there’s an alternative answer to this. What do you think?

(As an aside, does anyone know how long a brain and cord MRI without contrast will take?)

Thanks for listening.

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Hi,
It can feel like quite a slog going through all this diagnostic stuff. I think the waiting time for brain MRIs varies a lot around the country - it can take a couple of months to get to the MRI machine. After that, they sent the scan to a radiologist to review it, who then forwards his report to the neurologist. I was told to allow 8 weeks for this… then you need an appointment. In the meantime, you’re left being hyper-sensitive about every twinge you get.

But look… even if you do have MS, that is not going to make you into less of a Mum. So many people who get diagnosed seem to fear that at the beginning. But there are posts out there on MS sites from children saying how much they’ve learned from having a mum with MS, how she showed them what is possible. Good mums are mums who care.

If you have MS, you will be able to start treatment for it. It’s a good sign that your neurologist wants to get on with this if necessary - that would improve the outcome. And then you’ll be like other mums out there with MS, on effective treatment to prevent relapses… life may not change that much from what it was. So you can get on with looking after your gorgeous boy.

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