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still waiting

I’ve been back to the neurologist and he managed to retrieve the mri scan I had for concussion in june just before I started with the symptoms. He said the white matter was unspecified but he is not ruling out ms so he has booked me in for another mri on my brain and spine so he can compare results. Can anyone tell me what unspecified white matter means and can ms show up on the spine only? I requested a blood test for b12 anaemia too as it can also cause neurological symptoms.

Hello Steph Your scan showed lesions but didn’t give clear indication that they could be caused by ms. Which is why neuro wants repeat scan. I have read that in some cases ms can show in spine only. Good luck with next scan Xxx

Thanks blossom, my biggest fear is that nothing will be found and I will have to live with the awful pain and not knowing what it is :frowning:

Hello again Steph It’s understandable to feel scared, this is an anxious time for you. Hopefully your next scan will help your neuro make a diagnosis. Have you been given any medication to help relieve the symptoms? Neurological conditions can take a long time to diagnose…many of them are so similar. I hope you have family supporting you Steph. ((((((Hugs)))))) Noreen

I am on gabapentin and baclofen. The neurologist is reluctant to increase the baclofen. I’m having a lot of cramping and pain in my hands and feet. My family are supportive but I do think sometimes that they think I’m playing on it. At least with a diagnosis it is reality. Xx

Yes I know what you mean. I didn’t want a diagnosis of MS but it allowed me to move forwards. In a way I’m used to a certain level of pain…I’ve had the arthritis since 2006 and never been totally free of pain. Somehow it’s just becomes the norm…for me anyway. Maybe you could provide some leaflets for your family about MS, to give them an idea of your symptoms. It’s not easy is it? Just try and take each day as it comes…that’s what I do. You will get bad days but don’t we all? I always have a secret supply of good quality chocolate in for really down days…and happy day too if I’m honest Lol Take care, Noreen xxx

PS: not that I’m saying you have ms…just thought giving your family some info might help them understand your symptoms.

My lesions are non-specific too. This just means there are signs of inflammation but the size/location/appearance isn’t typical of MS. Sometimes they can be age related but in someone with neuro symptoms you always have to wary. Good luck with repeat MRI’s. I had mine re-done 3 months after with no change and now 1 1/2 years on just had a new set and waiting for results. I’ve also had other tests to help confirm if MS as have had other new symptoms.

Good luck again on your journey

Reemz

X

I think it’s called transverse myelitis (or something along those lines) if it’s lesions in the spine only as I know someone who has that (trust me, it doen’t sound any easier than MS!). I don’t know her very well but she was really kind when I got diagnosed and told me what had happened to her.

I was referred to the neuro after a spinal MRI. He examined me and showed me my MRI (white dashes in spinal cord) and he believed I had MS and that they needed to do a brain MRI - he’d see me again after that. I joked and said “so not a brain tumour?” He said no, not a tumour but likely that there would be more lesions.

I wasn’t being flippant joking about it but I knew next to nothing about MS, so I didn’t understand why my spinal MRI had got me referred to the neuro and I was pretty worried! I truly thought they were looking for a trapped nerve, I was shell-shocked, especially when I saw my brain MRI.

Sonia x

Thanks for the advice, I’ll just have to be patient and wait x