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How long does it take to be diagnosed?

Im feeling really low with all this, please excuse my ranting! My journey started Christmas 2016, just before this I had pins and needles in my feet and an occasional feeling of numbness but on boxing day night it hit me like a tonne of bricks, my left leg and torso went completely numb, I had excruciating pain around my abdomen, sides and back, at its worst I couldn’t go to the toilet. I went to a&e and saw an out of hours gp at the hospital 3 times and they didn’t have a clue, just sent me home with Buscopan! I continued to see my gp but wasn’t referred to a neurologist until June. I’ve only had 2 short appointments with him and had a full spine and head MRI, after them first saying it showed nothing they decided they could see a thoracic lesion and I was sent for another MRI, just waiting on results. He mentioned it could be myelitis but my worry is I’m constantly developing new symptoms and the pain in my back has risen further up my spine to my chest. I was told by my gp that MS doesn’t start in the thoracic area so it can’t be that but he also said I should have recovered from myelitis. I’m at a loss, every test takes forever, I’m still waiting for him to decide if he’s doing a lumbar puncture. I am considering moving over to a private consultant for a bit as nothing seems to be moving, today I’m in agony and ibuprofen just isn’t cutting it.

Hello

You do sound absolutely fed up, if you’ve been on this path for 2 years, that’s a flipping long time to be in pain and searching for a cause. No need to apologise for a rant. It sounds like it’s needed.

I don’t really think your GP is the best person to be paying attention to about whether it might be MS (or not) as only a neurologist can either make a diagnosis or rule it out.

This is the booklet on Transverse Myelitis from the Brain and Spine Foundation: https://www.brainandspine.org.uk/wp-content/uploads/2018/02/BSF_Transverse-myelitis-A5-booklet.pdf It LP might be of interest to you.

It doesn’t necessarily sound like MS, if there’s no evidence of demyelinating lesions in the brain or elsewhere in the spine. But it could still be, you need a neurologist to absolutely rule MS out. In your situation, a lumbar puncture might well be quite valuable as a diagnostic aid. About 80 to 95% of people with MS have Oligoclonal bands in their cerebrospinal fluid (but not in the blood). Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture That will give you more information on LP.

Maybe you could write to your neurologist (or contact his/her secretary and ask for an email address in order that they could forward an email to the neurologist). You could ask quite straightforwardly for a lumbar puncture in order that you (and they) could use it to get some greater clarity on your condition.

I personally wouldn’t be too keen on moving to a private neurologist at this point. They’d be starting from scratch with you, and you’d end up spending a lot of money on appointments and tests (MRI and LP tests are very expensive). You could ask your NHS hospital for a copy of the MRI to show a private neurologist, but it could still take a lot of time and money to be no further forward.

I do hope you manage to get some proper answers soon. Two years is a long enough time to be hurting and looking for an answer to your pain. If you feel you’re not getting the best care/service given your situation, you could approach the hospitals Patient Advice and Liaison Service (PALS) for help.

Sue