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Referral to neurologist

Posted , 4 users are following.

jeanp
jeanp

Hi everyone, hope your energy levels are good today!

Have been suffering with chronic fatigue since end of 2013, but have not been diagnosed, though my GP thought it "might be" CFS. She found low iron, then B12, which I take supplements for, but nothing else. She has now referred me to a neurologist. I was wondering what investigations a neurologist might do, what sort of questions they might ask, etc - can anyone tell me?

Thank you.

Jean

0 likes, 8 replies

8 Replies

  • david59662
    david59662 jeanp

    Posted

    Hi Jean,

    Like you i became unwell lsate 2013,Nov, with viral like symptoms. Never fully recovered. Left with persistent fatigue, prior to i was a triathlete/marathon runner 6+ years. I am 34 feeling like 94. Give or take a year. LOL Had to stop work.

    A neurologist will investiagte your brain, mainly. You might get an MRI. I am still waiting to see a neurologist and only got referred one month ago with a waiting time of 12 weeks. I find that so odd as ME/CFS is classified by the UN as a neurological disorder yet my GP's have never once wanted to investiaged this, that is despite me telling them i have clear neurological symptoms. I hope you get an MRI as this will let you know what is actually happening in your brain.

    What were you like before CFS and did you bet a virus in the beginning ?

    Thanks

    • ChloeCybil
      ChloeCybil david59662

      Posted

      I also have been battling CFS since the beginning of 2013 and it started with a virus. I had worked outside the home for 35+ years and am now no longer able to hold a job. I had an MRI of my brain and everything came back normal. I had tons of tests including ultrasounds, CAT scan, EKG, MRI and endoscopy and many blood tests. I am the healthiest sick person I know. It's a frustrating disease and as I read all these posts from other CFS sufferers, I only see people grasping at anything to get better and wasting lots of money in the process. At one point I was in total remission and felt great, but another virus plunged me into a relapse which I am currently trying to recover from. What I find is that your body has to heal itself and yes I take probiotics to help me with my stomach issues and some supplements but there is no instant cure for this. Those claiming to have a cure just want to take your money......
    • david59662
      david59662 ChloeCybil

      Posted

      Hi Chloe, you said-

      'I am the healthiest sick person I know.' I liked that one. lol

      I'm heading in the same direction.

  • jeanp
    jeanp

    Posted

    Thanks, David and Chloe, for replying. My fatigue didn't start with any viral problems (as far as I remember); I did have a lot of stress at work, which made me very tired but then it never went away. I am 61 years old, was fairly active before, liked a bit of walking,swimming, cycling - but nothing like triathlons or marathon runnning!

    The only other thing I think may be connected is that I had a hip replacement five years ago which now needs revision as it is a metal on metal implant and this has caused high levels of cobalt and chrome in my blood. But I am trying not to assume that is a cause, because after the revision operation, the fatigue might not go away. Just as people jump at possible cures (and I agree, perhaps waste their money) it is easy to grasp at possible causes too, isn't it? Because otherwise it is inexplicable.

    I am still able to hold down a job, luckily, because I have an understanding workplace, and as it is in education there are regular weeks or fortnights off, which helps. But it is often a struggle, and other people really don't understand what it is like unless they have gone through it themselves.

    ChloeCybil, I like the healthiest sick person description too - I will aspire to that!

     

  • ChloeCybil
    ChloeCybil jeanp

    Posted

    I know the first time I became sick with the persistent fatigue and other symptoms was after I had caught a virus. I got over the virus and that's when all my symptoms started. I did go into a remission and got my energy back but this last winter, I got another virus and WHAM right into a relapse of CFS. Each day I wake up hoping to see an improvement, but so far not much. I am thankful that I can keep my house clean and keep up with laundry. I still manage to cook almost every day. I can take short walks weather permitting. Some days I feel good enough to go to the grocery store or run a couple errands. I am thankful that I am not bed bound like some CFS sufferers. Just want to wake up one day and not feel exhausted before the day even begins. I know this will pass, just not soon enough. It will be interesting to see what the neurologist tells you. Good luck!
  • jackie00198
    jackie00198 jeanp

    Posted

    Well, a neurologist will be especially good for brain and nervous system problems. Do you have any issues like tingling, numbness, etc.?  Also, a neurologist can do an MRI, thus ruling out stuff like MS. Have you done all the bloodwork necessary to rule other other illnesses? That's important, because CFS/ME is a diagnosis of exclusion. I think it's important that you get diagnosed. A specialist familiar with CFS/ME is a very important resource.
    • ChloeCybil
      ChloeCybil jackie00198

      Posted

      If you had read my post before this last one, I had listed all the tests I had done including a MRI. I have had all the blood tests ruling out everything from a-z.

          I do not have any numbness or tingling. I have had a full recovery In the past and I will get there eventually again. I know what I am dealing with and it takes time and patience and rest. I do moderate exercise and take probiotics and supplements. Just trying to get my immune system built back up. Thanks for your input.

    • jeanp
      jeanp jackie00198

      Posted

      Hi Jackie

      Sorry mised your reply earlier. I have tingling and numbness, but that's due to a dodgy hip and back, I think, as it is only on one leg. My GP has done a few blood tests, and I am due booster B12 jab tomorrow, which I hope will help. Iron and B12 were low earlier this year, but the fatigue and dizziness and brain fog  have never really gone away, though I am lots better. As I have a break from work of six weeks soon, I plan to act as if it's CFS and try some pacing, with lots of rest. Neurology appointment is not until Sept 10th.

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