No diagnosis

Hi,

From my previous pstings i was referred to a neurlogist due to weakness in my arms, legs and chest. The weakness is worse after activity. Just got some bloods back which were negative for Myasthenia gravis.

I remember reading on here a while ago that some people expereinced weakness in muscles which was due to cervical and lumber spine problems which i also have. Due to been passed around to specialist to specialist and with symptoms remaining, i wondered how i would get someone to fully investigate if my spine problems could be the cause.

Any advice please.....

Christine

6 Replies

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  • I understand how frustrated you feel as I'm being assessed by a neurologist presently - waiting for tests plus brain MRI to happen in January - feel sure it will all be clear and I'll be none the wiser. However the neurologist did diagnose small fibre neuropathy which he confirmed as progressive - but warned the cause may well prove to be unknown. I have weakeness in arms and legs too as well as chronic burning nerve pain and crawling sensations plus some numbness in my feet and hands and groin now.

    I don't really know the answer to your question I'm afraid but I'm guessing you may need to have an MRI - in which case the GP would probably be your first port of call. Do you have a rheumatologist for your RA? Would they be able to advise on what may be causing your problems? I have infrequent pain in my shoulders and neck and have been told by the physio that I have OA in my lumbar region too but I just keep exercising daily as she showed me to do a few years ago and it comes and goes as severe locking and stiffness. I'm told it wouldn't be the cause of the peripheral neuropathy in my case though. I wish they would do an MRI of my neck not just of my brain next month though just to make sure!

  • Thanks for your reply...i have had 2 mri scans in the past four years for cervical spondylitis and lumber problems. What im expereincing now has occured since the scans. I too get pain in neck and upper back along with a burning feeling.

    It seems to me that standing and walking causes my muscles to over work and then they keep on working for hours when i am resting.

    Iv been tested twice for mysthenia gravis and twice negative.

    I still beleive my spine is involved.

    The condition you mentioned i have heard of but know nothing about it, is it always diagnosed by mri.

    Thanks

    Christine

  • It is usually diagnosed by a neurologist as a process of exclusion of other possible neropathic conditions. 50% of people have it as an idiopathic condition (no known cause). Of the remaining 50% - diabetic neuropathy accounts for 30% and the remaining 20 often comes with Vasculitis or Pernicous Anemia but there is a tiny percentage that can be immune mediated progressive neuropathy - sometimes part of primary Sjogrens Syndrome. Sorry I've become a neuropathy bore now!! X

  • You learn more on here from people like yourself than from any medical person i have come across.

    I have to go back to neuro at some point and think that MG is not what i have even though some people are seronegative,

    Its a hard road because symptoms are so varied. I also have Hashimotos and an underactive thyroid and crohns disease.

    When im in bed a feel my limbs go numb with electric shocks shuddering down my body, thats another reason i though it was coming from my back.

    Christine

  • You probably should have been referred to a neurosurgeon (or a spinal surgeon) rather than a neurologist if your problems are likely to be coming from spine/neck or stenosis. Even if you don't want surgery, they are the right people to check what is going on in your spine.

  • It was the neurosurgeon that referred me to a neurologist. Im back and forth to pointless referrals all the time. I think one of the problems is that specialists do not take the time to do a complete assessment, its all too rushed.

    Thanks

    Christine

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