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Neurology

Posted , 4 users are following.

sandra63543
sandra63543

Hi thank you for accepting me to group,sadly I have been ill for three years now,I have ceoliac disease,fibromyalgia, cfs/me. My symptoms have become more severe, I experience electrical sensations on head,face,legs,pelvic bone. I have become very dizzy,my ears feel blocked,doctor has checked twice both ears are clear. I am waiting to be seen by a neurologist, and ent,now since October, I think I have ms,I am frightened and confused,could anyone advice me what I do next. I have lost my job,my friends,my family,my identity,.

0 likes, 7 replies

7 Replies

  • marilee43089
    marilee43089 sandra63543

    Posted

    Why is it taking so long to see a neurologist?   A lot of us here are probably in a somewhat similar situation; thinking we might have MS but not yet getting diagnosed. In my researching it, it seems for many people it takes years to get diagnosed.  In your case, I think you just have to wait until you see the neurologist and hopefully get the MRI or Lumbar Puncture and go from there.   I, and probably a lot of us here, understand the fear and living with the uncertainty.  Some people are able to handle living with severe health problems and others pretty much have a mental breakdown with worry.
    • sandra63543
      sandra63543 marilee43089

      Posted

      Hi Marilee thankyou for replying to my sos,I was diagnosed 7years ago with ceoliac disease,and I am following a strict gluten free diet. Three years ago I was helping look after my father,who had a neurological disease,it is called cbd,cortosol basal degeneration. During this time I started to develop symptoms ie,sore muscles,heavy fatigue and dizziness, my doc diagnosed me with fibromyalgia. Sadly my father died two years ago,I was still working but had lost my social life,but I was determined to get my health back.
    • sandra63543
      sandra63543 marilee43089

      Posted

      But sadly it never came. I then developed more symptoms, my doctor diagnosed cfs m/e. He felt I had taken my fathers pain on ?
    • sandy67
      sandy67 sandra63543

      Posted

      Hi me too, diagnosed with fibro then Ra, then not ra! Then Meniere's disease but now after occy health did neuro tests, hoffmans and clonus coming back positive I am awaiting either another brain scan (previous showed periventricular white matter) or neurology appt but my doc is dragging his heels!! Fed up of not knowing what is going on. I'm shattered all the time, legs shaking uncontrollably. I saw occy health about 7/8 weeks ago, they wrote immediately to my gp who just out it on screen and didn't act on it. I had to chase them and I asked why they hadn't done anything "oh we thought occy health meant they were arranging neurologist and or brain scan" the receptionist tells me!! Yeah right like occy health do that! Anyway I had double apt with gp 4 weeks ago where he repeated tests - again all positive and brisk reflexes, tells me he will discuss with colleagues to decide what to do next. Still not heard from them!! Last week j went and saw another gp and said you know this has been 3 weeks since i saw doc so she says ok ill give him a poke! I'm getting pretty desperate now and don't know what to do. Wish I could afford to go private. My mates dad paid for her to be seen private she was diagnosed within a few days! I've been telling docs for years about my symptoms and it took an occy health physio to discover the clonus etc!! No doctor has ever done those tests prior to that. I'm quite angry actually that they never did them given my symptoms, as though they just put it down to fibro cos once you've been given that diagnosis they put absolutely everything down to it and of course there are many people that's all in your head!!! I have prolapsed discs, low vitamin d and b12, etc. How can that all be in your head?!?! You can't fake blood tests and scans for goodness sake! So every time I mentioned my legs shaking i was just ignored. It's horrible!!!

    • sandra63543
      sandra63543 sandy67

      Posted

      Hi Sandy

      Iam sorry to hear you have been struggling ! Its very similar symptoms to what I am going through, on friday I went to my docs again regarding the pressure I have in both ears,been given betahistine. Saw an audiologist today,my hearing ok,but she has refered me to ent ! Wish my doc had listened to me last year,but again because I was diagnosed with fibromyalgia its all put down to this. I feel lost. X

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