Could this be MS? What should I ask?

New diagnosis and before diagnosis
1

I’m 43 and female. My mother has MS. I’ve been struggling with fatigue, tendon injuries that don’t make sense, aches and pains that don’t seem to have any external cause, and on more than one occasion muscle soreness and stiffness that comes from nowhere, ever since my late 20s. I think I have two trapped/irritated nerves, one down the side of my leg, which burns, essentially sciatica and numbness, ever since I fell pregnant 16 years ago, and numbness/tingling in my little finger and ring finger, for the past 8 months. Ever since my daughter was born, my rib cage has felt tender along the bottom.

Last three years I’ve been feeling worse, getting what my GP says is an Mylar rash, indicative of lupus. Since December I’ve been especially bad, and last week it fell off a cliff. My fatigue was so awful the duty doctor sent me to A&E. My aches and pains have made me consider getting hold of cannabis (it’s helped in the past). My optician told me I have a mild nystagmus, which I think I’ve had for the last 6 months.

I was diagnosed with ADHD last year, but sometimes I feel like my medication was a dud because I get days where I can’t hold a thought in a bucket.

My GP referred me to a rheumatologist because of the Mylar rash and my family history of lupus. I don’t know why, but I’ve never mentioned my mum’s MS to a doctor (subconscious avoidance – my ex husband was diagnosed with MS when our daughter was a baby, so my brain says “no way!”)

I am seeing a rheumatologist in a couple of weeks. All my lupus blood tests are very clearly negative for lupus. I will send a note to GP this week admitting I forgot to mention my mum’s MS. Should I be worried?

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I think you’re doing the right thing, putting the GP in the picture fully. Non-specific, general problems can be hard enough to get to the bottom of. The docs need all the help they can get. Piping up about the history of MS in your family will not make it one jot more or less likely that you’ve got it.

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Yeah, you did well to tell them about your Mum having MS. After all if - if - you have it too, you need to be referred to a neurologist as soon as possible. Then you can get it ruled in or out.

On worrying: MS treatment has changed a lot in recent years - it’s becoming a much more treatable illness. The treatment is more effective if you start earlier rather than letting it drag on.

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