Hello and I really hope you dont mind me posting here. Last year I starting having strange feelings of heat in my legs, arms and feet. It came completely out of the blue one day when I was sitting feeding my 3 month old son. I thought for a moment I had my foot on a heater. These symptoms carried on for four months and at that point I saw a neurologist. He did an examination, said everything looked normal and stated that I ‘categorically didnt have MS’. He suggested it was anxiety which I know fine well it wasnt and sent me on my way. I had a full round of bloods done prior to this so B12 etc seemed fine. The burning feeling went away after another month or so and I felt much better (though not quite 100%). Then in May this year I got a bad cold. Feelings came back though much milder. But then I started to get muscle twitching in different parts of my body. Went on holiday slightly worried at the beginning of June and when I got back I started experiencing dizziness. A feeling of sort of swaying and disequilibrium. This has continued and worsened since.The muscle twitching is more noticable and I jerk a lot when falling off to sleep. On Friday I trimmed the hedge with the electric hedge trimmer (which I’ve done before without effect) and afterwards my arms felt crazy heavy and were shaking so much I couldnt hold a cup. Very scary. Been to GP who has referred back to neurology but didnt say anything about what he thought it may be. Told me I have up to 18 weeks to wait to see neurologist. I cant imagine how I will cope if I have to wait that long. I’m crying a lot and feel so weird with the dizziness. The muscle twitching is disturbing my sleep and I’m so so scared of MND and MS. I’m going back to see a different GP and wondered if I can ask for a GP referral for an MRI or if it has to be a neurologist. Can I ask them to hurry my referral. I cannot beleive anyone is expected to wait that long. I have two small children and its impacting on my ablity to look after them as I feel dizzy and constantly worried sick. Thanks for reading.
I think you need to take a deep breath and try to find a calm space for your racing mind to rest. More easily said than done, I know, but getting to the bottom of neurological stuff tends to involve a lot of time and waiting, and it is important for a person to find a way of pacing herself emotionally. Try not to force the pace, I would suggest. Things become clearer in the own good time, usually. This might be a bit of a long haul, and it is important to choose your battles, even when you think things are happening awfully slowly. Your advisors’ support is so important - be sure to keep them on your side. This might require a bit more patience than you can easily give, but the investment might be worth it. I hope you find out what ails before too long. Alison
Hi, Ms is a very difficult disease to dx so u will need to be patient, I first started with symptoms April 12 and was only given a dx of ms jun 13 I know it’s very frustrating to be in limbo land as I called it, as u don’t know how to treat whatever is going on. Good luck with yr Nuro Kel x
Unfortunately as the others have said it is a long process. I had my first episode in 2007 and still don’t have a firm diagnosis. Good luck x
I agree with the others. It can be a long haul.
I had my first symptoms in March 2012 and was misdiagnosed with a bulging disc in my back initially. It was Dec 12 when I was diagnosed with MS and that was only because I got optic neuritis in September.
Had it just been the problem with my leg I would have been getting steroid injections into my lower spine which would have been totally unneccessary.
It’s hard waiting it out but it may be a long road to diagnosis so I would say calm down and wait for the appointment. As someone else said, it is easier said than done but no point worrying unduly as there will be nothing you can change if it is MS.