What happens when tests are clear but still symptoms?

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For the last 12 months I've had numerous test mri (1 lesion), lumber spinal fluid (some inflammation ). Visual evoked test (clear) and cervical neck scan (clear).

Symptoms still here...fatigue, various sensation numbness and pins and needles. Bladder problems started with urine retention but occasionally wet bed without needing toilet. Big memory problems and fog. Weakness in arm. Legs sometimes feel like walking is difficult. Like there not fully controlling lower legs. Recently had another fall where I've hurt my thumb. As all tests say I don't have ms does this mean I really don't or will testing pursue over years? Has anyone else had all test prove no ms but then later proved wrong?

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4 Replies

  • Posted

    Have you had a lumbar puncture?

    Its so frustrating isn't it? What did the neurologist say about your lesion? That's not a clear scan or the inflammation. I have MS loads of ms symptoms but my neurologist thinks it's my spine. I'm so in empathy with you. Go back to the neuro with a list of symptoms and ask. Good luck 🌹

  • Posted

    Hi, i'm the same as you but in reverse, i have a list as long as your arm of symptoms the same as you describe & more that iv'e been told by a rheumatologist is Fibromyalgia, i also have a B12 definiency which can also cause neurological symptoms but i'm convinced it's MS and finally after 4 years i'm seeing a new GP who agrees with me and has referred me to a neurologist who specialises in MS to either confirm or rule it out. Trying to get a straight answer is like banging your head up a brick wall. iv'e had doctors who say my symptoms are not relared to MS when the NHS websitr it's self says they are. my symptoms have been getting worse since december 2016 & Fibro isn't a progressive condition, and iv'e been on b12 injections for 7 months with no improvement and my new GP said she has 2 patients with fibro AND ms so it could be that my fibro & b12 is masking the ms.. i just want it sorting out.. 4 years iv'e been fighting with gp's, it's just not good enough. Have you seen a rheumatologist?. and have you had your B12 checked?.. 

    • Posted

      Hi isn't it frustrating, I am seeing neurologist again soon but I am waiting to see back clinic neuro said muscular skeleton but go referring me to back clinic said it would take 12 weeks. I think I have a deficiency but the Dr was dismissive, been told to find another Dr after neurologist reminded her about my mud/skeleton appt.

  • Posted

    Just an update. I had my appointment with neurologist. Apparently I have read his letters wrong? He said he due to my lesions and bands in spine he is suspecting ms. However he can't diagnose ms without more clinical evidence so he's labeled it CNS. I need to go back In 1 yr for another mri to see if I have more lesions? So I'm just left with urologist appointment now for bladder problem. Any of you guys been label with inflammation of CNS (central nervous system)

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