Forum

Constantly on my mind... MS in the family

Hi,

This is a bit of an offloading post so please bear with me.

My mum was diagnosed with MS in 2003 when I was 16; she thinks she had her first symptom at age 30 shortly after I was born, prayed it wasn’t MS (having had first hand experience of it) then began showing really obvious symptoms in 2002 which lead to the diagnosis in summer the following year. I don’t know if mum had had any symptoms in the 16 years before her diagnosis but I know the symptoms she had in 02/03 came thick and fast: bladder problems, depression, lethargy, poor coordination - I even remember my dad having to pick us up from an open evening at school because she physically couldn’t lift her feet.

MS seems to like our family. Her mum had the condition too; she died of a heart attack when my mum was 16 after being confined to a wheelchair for 8 years. My cousin, too, has MS.

Mum’s MS, however, is severe. Less than a year after diagnosis, she’d been hospitalised numerous times and five years later she was in a care home. Needless to say, the impact of seeing her demise has left its mark on my in many ways. Aside from the obvious grief at losing my mum to this illness, I have had a persistent fear that I would also suffer the same fate (as my mum did after seeing her mum’s health decline.) Every twitch, every ache, every tingle I become overcome with fear that it’s the onset of this illness. Currently, I have aching, tired limbs and - although my logical mind tells me it’s down to my busy job - I can’t help shift the idea that it’s something more. I don’t really know how to overcome this feeling; I’ve been to the GP in the past - last year I had achey limbs and trembling fingers and she made me walk in a straight line, tested my reflexes and sent me off on my merry way. From what I know, the process of getting diagnosed is so lengthy and complicated that even if I asked for an MRI or a test to see if there were any indicators I had the condition underlying, it would be impossible to tell. But then I wonder if my mum had gone 16 years before she did, would her prognosis have been better? And if it was my worst fear, if the aching limbs and occasional tingle was down to MS, could I modify it now so that it never gets as bad as my mum’s?

Anyone in a similar situation? Any pearls of wisdom or words of advice?

Oh blimey Kat, as if life didn’t throw enough crap at you, you have to deal with the fear of MS too.

Yes, MS in the family does give you a slightly increased chance of having it. See https://www.mstrust.org.uk/a-z/risk-developing-ms for more details about the familial chances.

I know this isn’t going to change your feeling that every slight blip means you have it too. And unfortunately, there’s no easy blood test that’ll give you a yes or no answer.

All you can do is live your life, as well as you can, try to put the MS fear behind you. And try as much as possible to forget about the threat. Unless and until you have properly serious neurological symptoms that make you chase after an answer.

Meanwhile keep well, try to put it out of your mind and do everything you possibly can, while you can, just in case!

Sue