Problems with diagnosis

    • Anonymous
      January 28, 2014 at 11:59 am

      Hello all,

      I was recently admitted to hospital for tests with suspected GBS after three weeks or so of generalised numbness including face, loss of sense of smell and lack of reflexes in the knees following a high fever in late December.

      Brain MRI was normal, and the results of the lumbar puncture seemed to confirm Miller Fisher/GBS. The neurologists said I obviously had an very mild case as the symptoms had been going on for nearly a month with no major problems moving or breathing, seemed to have stabilised and that there wasn’t much to be done except wait for it to go away. I convinced them to let me leave hospital (they wanted me to stay another three days for observation and an EMG) as issues at home were making it very difficult and stressful for me to stay, and was discharged with firm instructions to come back straight away should my symptoms worsen.

      A week later I went to another clinic for an EMG which turned out to be normal, and the neurologist told me it was completely impossible for it to be GBS – not only because of the results of the EMG, but also because GBS a month in would entail paralysis of the legs. He told me the lumbar puncture result was most likely a false positive and that my symptoms could be anything. His attitude was generally dismissive and arrogant (he also felt the need to tell me no less than 5 times that I had made the decision to leave hospital and therefore had to accept any consequences. I realise that thanks!) and I felt as if he just wanted me out as soon as possible.

      I’m pretty sure that you can have GBS without major symptoms or paralysis – I’ve read several accounts on this forum for a start, which is one thing that gives me doubts about the 2nd neurologist’s opinion!

      However is it possible to have GBS (or some sort of variant of it) if EMG results are normal? Has anyone ever heard of this?
      Would be most grateful if anyone could shed any light on this! Many thanks.

    • Anonymous
      January 28, 2014 at 12:13 pm

      Sorry, nerve conduction study not EMG… Wrong term in English! 😳

    • GH
      January 28, 2014 at 4:14 pm

      Miller-Fisher predominately affects cranial nerves. Where were nerve conduction tests performed? If your legs are not weak, I wouldn’t expect an NCV to show anything wrong there. But I didn’t have MFS and Parry and Steinberg do not cover that point.

      It seems to me that there is so much variation in these types of disorders that there is plenty of room for anomolous results. While classic GBS causes paralysis, generally beginning in the legs, there can be mild cases which do not reach full paralysis. And with MFS, balance is more an issue than weakness. Is MFS a form of GBS? It’s just a name. It doesn’t matter whether it is technically GBS or something else with aspects which are similar to GBS.

    • Anonymous
      January 28, 2014 at 5:51 pm

      Thank you for your answer GH.

      The nerve conduction tests were indeed performed on my legs. I am suffering from numb hands and feet but not weakness as such (though there was the lack of reflexes) – more like generalised fatigue. I started suffering from balance problems and dizzyness in the last couple of days. The facial numbness is extremely unpleasant but there hasn’t been any paralysis or double vision so far thank God.

      I agree with your point of view about the relative lack of importance of putting a label on the condition. My main concern however is whether I should go with the initial diagnosis of GBS/MFS and wait it out, or push for further testing to see if it’s something completely different. I imagine the MRI and lumbar puncture would have ruled out most of the major nasties but it’s not the most reassuring situation as you can imagine.

    • GH
      January 28, 2014 at 6:01 pm

      Are there two neurologists involved here? Whose diagnosis is MFS? It seems like a sound initial diagnosis, but the neurologist should always keep ann open mind and not get locked in to a diagnosis (as should you), in my opinion.

    • Anonymous
      January 29, 2014 at 11:24 am

      The first neurologist (in hospital) diagnosed MFS through a lumbar puncture.

      The second neurologist (a week later, in a different clinic) performed the nerve conduction study and said it couldn’t be GBS or anything related as the NC didn’t show anything and my symptoms weren’t severe enough. It’s possible that he wasn’t very familiar with MFS….

    • GH
      January 29, 2014 at 3:05 pm

      I’m inclined to agree that the second neurologist might not know what he’s doing here. These things are not cut-and-dried, and the neurologist should keep an open mind about the diagnosis. In my own case, even though my neurologist made an immediate diagnosis of GBS, he emphasized that it was tentative and that he was considering the other possibilities. Eventually, my diagnosis was changed to CIDP. Rarer variants are likely to be harder to diagnose because the neurologist may have no actual experience with them.