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Really hope I get answers this time!

Hi I’ve had 3 ‘episodes’ for want of a better word! First time was two years ago then again a year or so ago then most recently during February this year! I’ve had issues with my walking, fatigue, pins and needles in my left leg and arm, balance issues, visual problems and more recently a crushing pain in my ribs! I had a spinal MRI 2 years ago Brain MRI 3 sections of the brain without contrast a year ago Discharged by neurology All symptoms apart from fatigue went away Then in February they all returned with avengence! I was rereferred back to neurology and the appointment is middle of June The only difference this time was my vitamin d levels were through the floor 9.4 they recently tested again and were up to 42! Not sure that ms is a correct ‘idea’ by my dr but she thinks it likely…time will tell with what neurology say but after being given two diagnosis, only for them to change their minds! Any ideas from those who have been diagnosed gratefully received!

I have been diagnosed but I think it is partial as I saw a registrar not a neurological consultant. My diagnosis was given in April, after a bout of optic neuritis in October - this took a lot of tests at opticians, then eye hospital for this the cause of my blurred vision to be ascertained. The eye hospital sent me for an MRI but then postponed the follow up appointment twice! I then got a severely numb foot and finally went to GP who was fantastic and ordered the results of MRI to be sent in. I then started to get lots of other symptoms - dizziness, balance problems, lots of tingly sensations etc. My MRI results showed >5 lesions and clear evidence of demyleation (sp?). My GP phoned and sweet-talked the Neurology dept into seeing me quickly and then I had to give a history of my symptoms and have neurology tests (reflexes, eye, finger to nose etc) done by the registrar who said it was most likely MS.

I have been referred to the MS specialist team of Neurologists and will see them in July, I have also been put into contact with an MS nurse but haven’t yet seen or spoken to them (my fault as I’ve been very busy at work). I’ve also just had a lumber puncture and 8 blood tests so hopefully this will give the next neuro enough of a picture to advise me on the next steps (DMDs hopefully).

By the way I asked my GP to test my vit D levels and they were quite high (can’t remember the number) but I think this is down to me taking vit D3 at 5000ui a day all winter to try and combat fatigue. MS doesn’t deplete your vit D levels but there is some evidence that shows that being deficiant in vit D can speed up the progress of MS. I still take my 5000ui daily and will continue to do so as I would have to take a whole lot more to do any damage and this is one thing I can do while I wait for further advice/treatment. Have a read about vit D3, it really is an important vitamin and one which most of us here in the UK don’t get enough of naturally. My other half takes it and when my children are a little older I will give it to them too.

Not sure if that long ramble will help but as I say vit D3 (NOT 2) can do no harm and while you await your diagnosis may do some good.

MJx

It is vitD3 I just want answers…2 years ago I spent 3weeks on a neuro ward being treated for myasthenia only for that to turn out to be an incorrect diagnosis! Since then I’ve just added ‘things’ to the list. I hadn’t been to the dr (apart from pregnancy related) for almost ten years so feels like I’ve had the rug pulled out from under me! Each time I’ve thought it won’t happen again! Thanks for your response!