Scared about being diagnosed


I have been experiencing neuro symptoms for a few years, recently they have increased. I get itchy and twitchy when I’m hot, I’m cognitively fatigued all the time and I really struggle getting the right word out. It’s like my whole brain goes blank. My memory is rubbish and I’m always tripping up or walking into things or dropping items. I’m super scared because I’m only in my early 20s, about to graduate from uni into a high pressure career and I feel like my dreams are vanishing into thin air. My dad has MS and its obviously constantly on my mind at the minute.

I’ve seen a neurologist and had a head MRI, he’s said that there were periventricular white matter abnormalities but because it was done in a mobile scanner they could be artefact. He’s referred me for another MRI for my head and cervical cord.

I could just do with a bit of reassurance and support from all of you. It feels good to just blurt all of this out!

Thankyou in advance x


Having a parent with MS makes you hyper aware of the symptoms, so it may be (I hope) that the abnormalities are not a sign of demyelinating lesions.

However, if they do prove to be, and you are diagnosed with MS, the most likely diagnosis is relapsing remitting (about 85% of people are given the label of RR). For RRMS there are now so many disease modifying drugs (DMDs) that can literally halt MS in its tracks, before you are badly damaged by it.

So I don’t necessarily think you’ll be unable to fulfill your dreams. I worked in a very high pressure environment for 10 years post diagnosis and that was mostly without the benefit of even the beta interferons. With a good DMD you can find your relapses are very few and mild. So the ability to work hard and to achieve career success is not beyond a young persons capabilities.

Best of luck with the next set of scans, let us know what happens, and of course, if you need help, advice, support in the meantime, just ask.


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