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scared and confused

Hi All Another newbie here. I’ve been combing these boards for the last 2.5 weeks. In short I was working abroad and was diagnosed with a bells palsy on the right hand side of my face, was prescribed steroids. Two days later I had to go to a&e as I had developed numbness on the left side of my body, head to foot. The neuro told me he suspected MS and sent me for MRIs of the thoracic, cervical spine and brain, all came back clear. Since coming home I have also seen another neuro and had an SSEP and EMG which were normal too. I realise this is good news but I can’t shake off my worry given that I still have numbnes, albeit subsided numbness and extreme fatigue. I also had pain and loss of balance but those symptoms have gone. My neuro has said he thinks this is something I should get over, that my various and ever changing symptoms make it less likely to be MS but as I was told it was MS in the first week I’m finding it difficult to believe. If anyone has any advice or guidance I would really appreciate it, I’m struggling with the whole situation. Thank you very much in advance x erything, it’ it

Hi and welcome to the forum,

Sorry to hear you are suffering with so many symptoms at the moment. Just a thought but have you had your bloods checked? Sometimes vitamin deficiencies and other conditions can mimic MS like symptoms.

It can take a long time to get a dx of MS as there has to be the right amount of clinical eveidence, in the right time frame and in the right places! I guess the best thing for you to do is try and get on with things as best you can, taking each day as it comes, and looking after yourself. Are you going to be seen by the neuro for a follow up? It might also be worth asking your GP about some help for your fatigue.

I hope things improve for you soon, people on this forum will always try and help as much as we can.

Lx

Hi

It is hard to be in that situation I know. One thing did strike me in your post though - you said the A&E neuro suspected MS and sent you for MRI tests… and later that you were ‘told it was MS in the first week’. I think you are maybe reading a bit too much into the first neuros suspicion - your symptoms alerted them to the possibility of MS, yes, but the tests were clear (which is great news) so, for now at least, it is not MS.

I have made a complete recovery from my first ‘attack’ - gradually over a few months - (though my MRIs were not clear), and unless and until I get a second attack (probably less than 50% chance in my case) I don’t have MS. So I’m living life to the full and hoping for the best.

I do hope your symptoms continue to abate - I know from experience that its much easier to move on when they do.

C

Apart from the Bell’s palsy your symptoms sound the same as mine and I ended up in hospital too. I was also told in hospital that I had MS (i have brain lesions and failed the SSEP) but as the visual evoked potentials test was clear they are now saying it is a clinically isolated syndrome. Trouble is i am not yet getting better after 7 weeks (i am still off work) so my hopes are fading. I know how unsettling it is but there is nothing else we can do but wait and see what happens, however difficult that may be. I guess you could ask for a lumbar puncture, but I’m not sure how helpful those are any more, or a visual evoked potentials test if you haven’t already had one, but it does sound like it was a one off if all your tests so far have been clear.