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Anyone have testing for MS due to symptoms???

jellyhalljjellyhall Posts: 4,373
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical

I have been being 'watched' every 6 months for 18 months because of the cord compression in my neck.

I had a second opinion from a neurosurgeon who suggested a 2 level ACDF.

Now, last month, they have decided that my symptoms may not be coming from my neck after all!
I am having a brain MRI scan on Monday and will then see a neurologist. They want to rule out MS and some other 'very rare' neurological conditions that they haven't named.

Has this happened to anyone else?
What did they discover?
Was it your neck after all?



  • How did they come up with this new possible diagnosis after having you wait sooooo long??? It's always a good idea to check the entire nervous system (brain included).

    My first MRI was of the brain because my primary complaint was headaches. I believe that my "pain" has not resolved because it was muscular. The cord compression symptoms are mostly resolved with the occasional tingling of toes and fingers.

    MRIs can be misleading sometimes. I'm still glad I had the surgery because of bladder issues and feet heaviness. My pain isn't gone and I doubt it will disappear entirely.

    Good luck, jelly!!! Hang in there and you will get to the real reason for your symptoms!!! :)
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches

  • Thanks for your support. >:D<

    My primary pain is also my headaches, although I get so many other symptoms all over my body.

    My pain consultant asked if there was anywhere I don't get pain. At the time I couldn't think of anywhere, but now I realised I should have said my nose!! :O)

    The level of pain I get is nowhere as high as before my lumbar fusion, so that is a relief. It is the headaches that cause me to use pain meds.
    I have been prescribed Nortriptyline to see if that will help. I have been taking it for a couple of weeks, and think I may be getting less of the 'zaps' and burning pain in my feet and hands. I still get it, but I think it is less often now.

    Before my fusion I was told that I would always have back pain as my spine is rather degenerated.

    Take care Lili
  • Hi,

    I know you are in the UK,so that the wait and see attitude is pretty much the norm. My guess is that because alot of your symptoms mimic central cord syndrome or MS, they want to rule out the MS, since it wouldn't be helped with surgery.

    How long do you have to wait now for the brain MRI and then the neuro visit? Do you even know yet?

    I hope that you will get some answers soon. Being in limbo takes it's own toll, your body, your mind..(at least mine :D )

  • I am having my brain MRI scan on Monday. They got an urgent one so that we will have the results when I see the neurologist. I don't have that appointment yet.

    I also see my neurosurgeon next week. I wonder what he will think of this new turn.

    You are right, all this waiting does get on your nerves! (pun intended!)

  • jellyhalljjellyhall Posts: 4,373
    edited 06/14/2012 - 3:14 AM
    My appointment with the neurologist come on the same day as the neurosurgeon, so I could just spend the day at the Neurological Hospital!
    It is now three weeks later, and I haven't heard what the neurologist thinks yet. He did say that he would probably refer me to have EMG and nerve conductions studies done to help with the diagnosis. He didn't look at the brain scan while I was there, so I have no idea of what that showed.

    The neurosurgeon has said that I need to have a 2 level ACDF to protect my spinal cord if I had a fall or was in an accident, as it is already being compressed and there is no spinal fluid to provide a cushion, so it would very likely be 'bruised'. We agreed that we should wait for the diagnosis from the neurologist before scheduling surgery, but he told me to be careful while I am waiting. I got a letter the other day for a follow up appointment with the neurosurgeon in November! I hope that I will have a better idea of what is going on long before then!

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