Hi, I have never used anything like this so all abit daunting. My name is Hayley I am 41 and have been having symptoms probably for years. I have had a niggle in my mind for a really long time that I might have MS. It was some recent bloods after an episode of neuralgia that highlighted the concern with the GP. High inflammatory markers. She then told me to go to the opticians where they found optic neuritis. I am currently waiting for an MRI and appointment with a neurologist. I am struggling with this limbo stage of not knowing and don’t know what to do to help myself in the meantime. As someone independent I am finding it all very overwhelming. Any advice on how to manage this stage welcome. Thanks
Hi HayleyCassell
I saw your post and fully appreciate how hard it is to reach out for the first time so I just wanted to say Hi!! Sadly it is very often a ‘waiting game’ once you begin on the pathway to a diagnosis of any kind but I wish you all the very best in your journey.
Take care Anita
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Hi hayleycassell. Sorry to hear about this. As Anita says, it’s a waiting game. Sometimes a long waiting game. Not to give you too much despondency but, it was 11 years from my first episode of optic neuritis to being finally diagnosed with ms. Patience is a virtue and you’ll need bundles of it at times. Try to get on with your life as best you can. Be kind to yourself. Rest up if you are feeling tired or fatigued. Take care and wishing you well and hopefully you’ll get your results as quickly as possible, so you’ll know one way or another if you do indeed have ms.
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I’ve no magic tips on dealing with the ‘in limbo’ phase and I guess that to some extent how you deal with it depends on your personality ( I didn’t deal with it very well and made a few irate phone calls!). On thing you could do is learn as much as you can about MS, the available treatments and their different types ( there are now quite a few of them!), things you can do yourself like diet , exercise, meditation/mindfulness and things you shouldn’t do like smoke etc
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Thank you for the reply, I just feel lost and not in control.
I am sorry that you have these worries to deal with. I’m afraid there are no tricks for making limbo land a nice place to be or the waiting any less wearing on the nerves. All you can do is to pace yourself emotionally as best you can for what might be a long process of finding out what ails. I hope that you start to get some clarity soon.
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I strongly agree with the strategy of proactive research.
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Hi there, I got my diagnosis today. I went to the GP back in May because I’d found I’d lost strength in my right leg, probably been having trouble for 6 months or so before that.
Had an MRI that showed inflammation, then had about a million blood tests, a lumbar puncture, full body PET/CT scan and follow up MRI.
I was probably lucky with the speed of diagnosis as I had a really good consultant and medical insurance.
I’ve now got the diagnosis and entering into the next bit of waiting, to determine any treatment.
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Hi there,
The limbo stage is so hard, I really sympathise. I was diagnosed about a month ago, and that took about a year from start to finish. I think I was one of the relatively lucky ones, as for some people it takes longer.
At one point early on I saw an MS specialist neurologist privately, and that helped to ease my mind a bit. I don’t know if anything like that is possible for you?
I hope you get through the process. Distraction can help.
Sending my best wishes