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Appointment with new Neurologist -with unknown ME/CFS beliefs

Discussion in 'ME/CFS Doctors' started by sproggle, Mar 15, 2010.

  1. sproggle

    sproggle Jan

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    Teesside, England UK
    I'm seeing a new neurologist first thing Wed morning.

    I have previously had two appointments with another neurologist, at the same hospital but unfortuantely he has now retired :worried:

    I orginally arranged the appointment specifically to see the guy I'd seen before as he was great with me &honest about being taught at medical school that ME was not a real illness but that he had seen 100's of ME patients while practising &assured me he knew it was a very real physical illness. Go Mr Tilley!! :Retro smile:

    On both my visit's to my (highly regarded but now retired) neurologist Mr Tilley I was too unwell to discuss things fully with him &I now have questions regarding the tests he mentioned me possibly having etc. Starting over with a new one is concerning me after having terrible experiences with an Infectious Diseases Consultant over many years who basically bullied &shouted at me.

    Moreover, I don't want to get home &think of things I should have said or asked about while there as it has taken over 4months to get my appointment!

    Anyone able to give advice on how best to deal with a new neuorolgist? I'm tempted just to concentrate on knowing my symptoms &see what his reaction is so I can judge his performance? On the other hand I keep doing google searches looking at what tests I think should be done etc... so I can go in with a stack of info incase he's useless. My minds spinning over this :worried:

    Jan xx
     
  2. Adam

    Adam *****

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    Sheffield UK
    Hi SuperSprog/Jan

    My experience is a mirror image of yours re Doctors. The neurologists were not that helpful (saw them 1997-99). My Inefectious diseases Doc is.. The problem you face with neurology seems to be that they are looking for certain signs associated with well-defined conditions. Not CFS/ME then?

    Perhaps the best way to approach this is to say _ I am diagnosed with CFS/ME, but I am open to another diagnosis. They are not good listeners IMHO. Wish I could offer you more hope. On the plus side, I imagine the scans they do now have moved on a bit since I was investigated - I thought I had MS or Guillanne-Barre, but no, they always said negative despite the fact I walk like somebody is pulling strings in my legs.

    Whatever you do - relax the best you can - don't tell them their job - they hate that.

    Fingers crossed.

    Adam
     
  3. sproggle

    sproggle Jan

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    Teesside, England UK
    Thanks Adam

    I'm beginning to calm down a bit. I've gone from over thinking it all &trying to be Super Woman (or SuperSprog :Retro smile:) &have all the information ready including my entire symptom list (which as you imagine is endless....) &what all the possible tests are &what they test for etc. to thinking it's best just to go in calm and see what happens...

    From past experience I know I won't be able to change his mind whatever his opinion. Like you say Doctors do not like being dictated to by patients!

    I do hope he is interested and open to new research &that if he isn't already clued up he would follow up any leads I send his way.. But I think that will be for another visit, if this one is okay of course &he doesn't just wanna see the back of me!

    It's a very strange position we're put in with doctors! :tongue:

    Thanks for your calming words :hug:

    Whatever happens happens
    Jan xx
     
  4. sproggle

    sproggle Jan

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    Teesside, England UK
    New neurologist Mr Newman(James Cook Hosp) was reasonable. That is to say he would not have been interested if i didn't have the tachycardia &arm tremors, which he said were unusual symptoms in CFS. I kept my mouth shut! Just! :innocent1:

    Getting lots of tests done, not sure exactly what yet....

    The one annoying thing was he kept saying I'd sufferered from fatigue for years, no it's not just fatigue!! Hmph! :( I didn't keep my mouth shut about that lol! :D He just brushed over my remark, so it didn't seem to antagonise him....

    Jan xx

    *Random event

    Major incident in the entrance to the neurosciences department. Someone being violent, half a dozen police &security guards. They were holding someone in a side room &he'd smashed the window etc..

    Was gutted I wasn't upto being nosier, I wanted to know what happened! There was a group of men giving statements but I couldn't hear em properly! Very nosey I know!

    He did what? when? OMG REeeaaaally? :tear:
     
  5. flybro

    flybro Senior Member

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    pluto
    LOL Sproggle

    That would've bugged me 2. I hope yr scanning the local news there and will let us know what 'went down.'

    Fantastic news on getting some neuro tests.

    I'm so excited for you I'm grinnning ear to ear.
     

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