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Undiagnosed, confused on what to do

user234uuser234 Posts: 2

12 months ago I hit the back of my neck quite hard (just where your shoulder match up with the spinal cord), the next day I woke up with numbness in my right thigh. 8 days after this in an instant my whole body became fully numb spreading from my upper body downwards. I was admitted into hospital for about a week, where I underwent X-ray, MRI scans, blood tests and a lumbar puncture which showed that all results were clear, because of this I was allowed to go home after the one week as my symptoms felt like they had subsided slightly. The next day they were just as bad as the night I was originally admitted to hospital. My full body numbness lasted for about 2-3 months, during which I experienced electric shock pains throughout my body, pins and needles, muscle weakness, balance problems, fatigue and trouble with concentration, memory and migraines. A neurologist I went to dismissed me as having a 'migraine' in which would go away in a month or so and said that I do not need a nerve conduction test (which was the reason I originally went). A second neurologist did not asses me properly as he was a colleage of the first neurologist I had seen and just pretty much said if the other Doctor said it was a Migraine, it must be that. 9 months after those initial 3 months my body had regained some of it's touch senses back,, however I'd still at random times experience full body numbness which was triggered by certain positions I was sitting in, standing, or how what physical movements I performed, sometimes even when I felt I was doing nothing at all. The electric shock pains were always present regardless and sometimes unbearable. My hands and specifically my fingers are still very numb, as well as my right lip which has regained about 50 % of its full sense since I hit the back of my neck. Now, 12 months later I am STILL experiencing numbness in my right lip, hands and fingers and fluctuating numbness and pins and needles around my whole body at random moments, sometimes it can last for days..sometimes a week or two, though I always have a degree of numbness present in places other then my hands and fingers (which are frequent). The right side of my body does not feel as sensitive as the left side. The migraines have stopped (around 4 months ago). Where I hit my neck originally is still sore to touch and causes a burning pain which radiates throughout my body if pressed, I experience daily shooting pains, and joint and back pains as well as cold flushes down my body that can occur for hours (especially down my arm and right side of my body) . There are more details I have failed as I always miss them when I explain my situation. I am convinced it is nerve/disc related but I need a diagnosis to set up a treatment plan. I honestly don't know what to do...My right side feels weaker than my left, especially if I'm exercising. At some points My arms feel like they aren't really there and at times I can't localise my hands when I'm not looking at them. The Doctors said it would get better 8 months ago but nothing has gotten better except for the full body numbness (which returns at times)...Has anyone else experienced these symptoms with no proper diagnosis from a Doctor? A lot of people dismiss my symptoms as it was 'ages ago' and it has passed however I still live with it every day. It's frustrating when I don't know what could be making it better/worse and if I should be avoiding certain activities and performing prescribed exercises to help me. I honestly feel like it won't get better because I don't know how to go about improving my symptoms. I have not been prescribed any medications, I only take ibuprofen and panadol.
I am thinking of going to a new Doctor and starting from the beginning and investigating again.


  • I can't believe this has gone on so long, undetected. Clearly you have something going on here.

    If your MRi shows nothing, perhaps the next step would be further testing such as scans, nerve studies EMG & some diagnostic shots? Ask your Doctor about this ASAP. MRI's don't always catch the problem and please don't go another year suffering! Be firm and don't take 'no" for an answer! This is your life! Take control!

    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    I agree w Doug, you know ur body best. I had very similar symptoms that were eventually diagnosed as small fiber neurapthy, autonomic dysfunction and central sensitization. As it progressed I loss the feeling of where my limbs were in space, propriception is name for it I think, but I had to look down to know I had legs sometimes. I had multiple EMG/nerve conduct ions but small fiber nerve damage does not show up in these tests. All this from a neck injury I had 3 yrs ago, I was diagnosed with everything under the sun early on. There are some disorders that benefit dramatically from aggressive approach early vs
    conservative . I would continue to convey u are not getting better to Drs and reasearch online the current symptoms and see if the diagnosis u were given matches what u feel in your body.
    An initial diagnosis was given in your case but I think now it's the doctors responsibility to explain why it is still going on long after they said would go away and is that common w diagnosis given. A doctor holds no ling term problems if that diagnosis is wrong so you have to be your own advocate if feel something else is wrong
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thank you, I am worried that my condition will only get worse as time goes on. I also forgot to mention I had CT scans too but they showed nothing.

    I'm going to book in with my Dr and ask him to investigate further into it, I'm going to make sure I get a nerve conduction test done and any other means of testing to properly diagnose me.
    How did you end up getting your diagnosis with fiber neuropathy, autonomic dysfunction and central sensitization ? I'm not sure what I should ask the Dr to do because they always bring up that my scans were 'clear', its very frustrating..
    I believe when I hit my head orignally I compressed a nerve but now it may have progressed to something more long term..
    I find it difficult for Dr's to really take me as serious as I feel my condition has become, I put my studies and work on hold for a whole year last yr to get better (as the Dr's recommended) but nothing is getting better.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    3 Years of testing , a lot of dead end roads and in end Qsart testing diagnosed the autonomic and small fiber neurapthy , the central sensitization was the amount of pain I was in and many other symptoms . My stuff was rare but the idea to advocate for yourself and push to find out what's wrong is the same. It's your life and you care more about getting better than anyone cause u live it. What type of Drs have u seen? My scans were pretty clear to other than damage we already knew was there and accounted for
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • geoggeo Posts: 18
    edited 02/08/2015 - 3:37 AM
    keep after them,in same boat and can get very frustrating especially dealing with constant pain and now cognitive issues.over the course of time has been AS,OA,and some other things but drs dont know, one thinks possibly MS another RA.but have yet toget a solid diagnoses other than the OA from the xrays,in my case, they have yet to try any other tests but seem to go back and forth as to possibilities and which symptom is a better indicator and how strong in the bloodwork it represents? -so have to keep after them.keep pushing them to check things out.
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