Is this MS?

New diagnosis and before diagnosis
1

Hello,

In 2007 when I was 18 I developed optic neuritis, which was quickly diagnosed in eye casualty. The symptoms were awful with complete blindness and horrific pain. I made a full recovery and had an MRI scan. The scan was clear and I was told I was in the “low-risk” category for developing MS in the future. Not everyone who has this will go on to develop MS. I was then discharged.

In 2016 I was diagnosed with Crohn’s disease and have been on 50mg of azathioprine ever since, my weight is around 51kg but any higher dose of azathioprine causes my white blood cell count to fall.

In 2017, 10 years on from the optic neuritis episode I developed aching in my right eye socket that would come and go. I knew it wasn’t optinic neuritis again but given my history I had it checked out. I had another MRI scan without contrast which again was normal and I was again discharged. The symptoms still happen on occasion but fairly rare.

Then last week I flew to Lisbon and upon arrival noticed tingling in my right calf. It subsided by the weekend and I flew back on Sunday. But then on Monday I did a huge hike and it returned and been tingling ever since. It’s been 12 years since my optic neuritis episode and I am now 30 years old. The symptoms in my calf are mostly at the back from the calf to the ankle but sometimes I can feel it at the front in the shin too. The tingling is mild and doesn’t impact my walking at all but it just frequently feels “there”. Obviously I’m frightened. What are people’s thoughts?

2

Hello

Having had two brain scans that were clear of demyelinating lesions, there is a likelihood that it’s not MS.

But, I can see why you’re worried. It makes sense to get checked out, even if it’s just to reassure you.

If you see your GP, explain what symptoms you’ve had, ask for a referral to a neurologist just in case and then try to put it from the forefront of your mind. There may be a waiting list, so prepare yourself for a longish wait. In the meantime, if you get any other worrying symptoms, see your GP again and ask if s/he can change the referral to an ‘urgent’ one. Or, if you have any really scary symptoms, take yourself to A&E.

Meanwhile think back to all your times of possibly connected symptoms and write yourself a timeline, or diary of events. This will help your GP and the neurologist when you eventually see him/her.

But really, try very hard to put the fear of MS right out of your mind. The chances of your having MS are slim. If you find you can’t dismiss the thought, or have other problems you’d like thoughts on, come back to us. We’re really quite an inclusive group of strangers who will be happy to answer questions and provide moral and emotional support if required.

Sue

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