No diagnosis: Hi, From my previous pstings i was... - NRAS

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No diagnosis

yorkshiregirl44 profile image
6 Replies

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

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yorkshiregirl44 profile image
yorkshiregirl44
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6 Replies

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!

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

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

in reply to yorkshiregirl44

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

yorkshiregirl44 profile image
yorkshiregirl44 in reply to

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

earthwitch profile image
earthwitch

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.

yorkshiregirl44 profile image
yorkshiregirl44 in reply to earthwitch

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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