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You think ME is bad - try having a "Psychogenic movement disorder"!

Discussion in 'Other Health News and Research' started by Woolie, Feb 3, 2015.

  1. Woolie

    Woolie Senior Member

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    @btdt, I completely understand you not wanting to bother with the psychogenic movement disorder diagnosis. The treatment is pretty much CBT and exercise, so nothing new there. The only benefit might be a practical one. Some people will get a diagnosis of functional movement disorder (FND), and that seems to have a better status than CFSME with insurers and benefits offices.

    If you have no Huntington's in the family, then its probably not that. The only reason I'd want to rule that out is if you're planning to have kids.
     
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  2. btdt

    btdt Senior Member

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    I am done having kids too late now to prevent anything. I recall telling on CBT that if I could think well enough to do CBT I would not need it. Seems to me they missed the point and it could be I was too dim right then to explain it well. I have a movement disorder dx not specified I have no insurance and no hope of any... everything I had was lost long ago... I have had cfs for a long long long time. I pay for what I get now from a car accident settlement that will run out soon I am trying to hold onto some for treatment in a year and half but it is not looking good. I spend a lot of money on supplements and osteopath chiroptractor laser treatments ... money I can't afford. I rationalise it like this if things are so badI am not going to make it to the treatment I am trying to save my ,money for... then it is time to spend... so I spend and hope there is something or enough left when my name comes up on the waiting list...
    I have been disabled a long time without money... and yes it surely does suck. I hate having no security... hate it.

    I did not put to much energy into the psychogenetic thing I am that sure it is wrong and it is an opinion... it is kind of like shirks opinions after my opinion of shrinks opinions was devalued.. it no longer mattered to me what they said.. I was not buying... I am not new. I am no longer easily fooled and I will not buy in again... not be fooled again...Just like the Who sings...

    I took antidepressants for years almost 20 recently learned none of the one I took could work on me due to my genetic make up but the side effects were all real. btdt not new....
     
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  3. Woolie

    Woolie Senior Member

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    Yea, I totally hear where you're coming from, @btdt. You don't need to go a whole extra round with another bogus psycho-diagnosis.

    You mention osteopath chiroptractor laser treatments - is there money you can save there to put towards other ways to make your life easier?
     
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  4. HowToEscape?

    HowToEscape? Senior Member

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    " chiroptractor laser treatments"

    Those sound like an elaborate wallet thinning exercise. Perhaps getting a massage instead would be much cheaper, and equally or more effective.
     
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  5. btdt

    btdt Senior Member

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    Massage is actually more than the laser treatment and did not help me at all... not one bit. Yes it is expensive all of this is... I have thought today was the day to go over my budget past budget asI cannot sustain this treatment which is just keeping me walking kind of most of the time. I will be out of money soon and need a real plan ... something to keep me out of long term care... not sure what that will be yet as I have not had any luck finding any real help. Can';t seem to implement a plan myself ... I forget .. react.. hit a chemical reaction... fall on my face and can't seem to sustain clarity long enough to make much progress... a few staples I can't live without... glutathione... is one vit C B1 Vit E Cq 10 ... magnesium... just got a doc ho stimulator... we will see.

    What I do now is all reactive mostly... reacting to symptoms ... reacting to reacting if you like. In the long run I am not sure how much progress I am making nor for sure what helps other than things listed above... there is slow paced improvement limping along with bouts of backsliding...

    if I go long picture... last year at this time the full body movement disorder was just starting... with all I have done which is a lot most of my life is all about stopping this healing this trying to learn about this when I am... or think I am well enough to give it another shot....

    I had a time in the fall where many days were spent in bed jerking - reacting - non functional. Doctor gave me a referral for a scooter.. got on the 2 yr wait list for a movement disorder clinic...

    I am better now than I was then.... I have a table full of supplements sitting in front of me and countless other things I do...

    The osteopath was one of the things that kept me functional... I believe it if it is true or not... you could only know by trying. I would go in there so confused... bumping into furniture come out better not fixed but way better .... same with the chiro... I have one leg that will take spells and kick up every 10 seconds try sleeping thru that.. cannot be done... chiro can stop that... I am not given to conversation much ... I don't always form thoughts in the proper way at the proper speed to talk when I later think I should have... so there is not a lot of discussion... with them. I just know what is keeping me going and what is not.

    I think.... if I don't I am in even bigger trouble and it is all going to hell anyway so why not spend my money while I have some on something that helps me or at least I feel helps me...

    I do not think this is really ... can't find the word... just my idea that it helps me... subjective... may be the word.. maybe not... can't think that way just now... so far it is my money I get to spend it the way I want... I think it helps me to be more functional so that I will think better and possibly thru thinking better will be better albe to direct my care... there really is no care to directs so that was a stupid thing to say... better able to maybe find something to help myself...

    yes I may fail... we all know that likely will be I want the chance...

    doing all these things gives me a chance.

    Without it no chance... that is how I see it... if you have not tried osteopathy don't knock it till you do.
     
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  6. Cheshire

    Cheshire Senior Member

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    Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/
     
  7. Jeckylberry

    Jeckylberry Senior Member

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    The FND evangelists distance themselves from Conversion Disorder. They think it's much more fluid than that and not necessarily caused by an event in the past. But still this story is just one of the many many stories of patients with EDS, various and many neuromuscular conditions, POTS and other dysautonomias trying to be seen and heard. When I answered this thread I had never heard of these things. Now I'm an old hand with them, haha. So often people in my Facebook support groiups say they've been diagnosed with FND and these are quite disparate groups. And again, in Brisbane, the Rome that these roads lead to is Alex Lehn.
     
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  8. RogerBlack

    RogerBlack Senior Member

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  9. Woolie

    Woolie Senior Member

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    Don't get me started on this. The FND folks are actually worse than the conversion disorder zealots, not just because they hide the true nature of the concept from patients, but because they don't require any positive evidence to support the diagnosis at all (trauma, etc.). They have defined FND so loosely that the label can be freely applied to anyone who doesn't get a proper diagnosis.

    Nice to see you here again, @Jeckylberry!
     
    Last edited: Aug 22, 2017
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  10. Jeckylberry

    Jeckylberry Senior Member

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    Hiya, Woollie! Yes, agreed, there isn't even a trigger to blame. Most recent was a woman posting she had FND from a genetic condition. Apparently even that doesn't matter.
     
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  11. Woolie

    Woolie Senior Member

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    Do you belong to any FND groups or forums, @Jeckylberry? I've seen the HealthUnlocked one, which seems to be mainly requests for one-off advice or emotional support. I was wondering if there's a place where FND patients discuss the thinking behind FND and how it affects them.
     
  12. Jeckylberry

    Jeckylberry Senior Member

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    Nope I have not had the desire to seek support there. I haven't really accepted it so if I was to visit such places it would be with an attitude of resistance and probably resentment. I feel like people in support groups don't need someone like that.

    On Wednesday I went to a different neurologist and got told the same FND bullshit. It's hard to keep the faith. I was going to a general physician who thought I might have paroxysmal dyskinesia which sounded plausible considering the state of my symptoms now. She said to diagnose CFS would 'not help' in terms of getting me treatment. She referred me to the neuro and instead of saying dyskinesia she told him I had 'funny turns'. I felt betrayed. Again the neuro wanted to refer me to the now popular clinic (Mecca) of Alex Lehn. Sigh. I'm going in circles.
     
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  13. Jeckylberry

    Jeckylberry Senior Member

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    Interesting what @Mithriel has written here now that I myself have been having the same PKD symptoms. When I first started on this thread I didn't know anything about anything, now I'm taking Tegretol for clonus, laryngospasm and spasms. Terrible startle and of course it's still put down to the F word.
     
  14. Woolie

    Woolie Senior Member

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    The general consensus here on PR seems to be that Neurology is the worst specialty for psychologising. They seem to be the most inclined to attribute to psychological factors what they can't understand within their own discipline. Its a kind of a bizarre cartesian dualism, where if there's no easily interpretable neurological markers, the cause must be 'the mind'.

    There are pro's and con's of a CFS diagnosis. In the eyes of laypeople and insurers/benefits offices, FND certainly sounds more respectable than CFS. FND patients have not been so universally associated with irrational hysteria and threatening behaviour either.

    I'm currently finding out the con's of a CFS diagnosis. It provides some form of closure which is good, but once its in place, it can hamper further investigation of your health. I recently asked my GP to refer me to a rheumy on a private basis: I'd pay for the consult in cash. I knew he wouldn't agree to a regular referral, because he 'knew' that my symptoms were all down to CFS, no need for further investigation. He agreed, with the stern warning that in these cases, there's unlikely to be anything to find. Well, they did find something. That's a story for another day. But I'm convinced what they found would have been found earlier if not for 'CFS' on my record.
     
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  15. Jeckylberry

    Jeckylberry Senior Member

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    @Woolie Yes, they do seem to fob you off and jump to conclusions if you have those 3 letters. I think you're right. The F word doesn't have quite the same automatic response to it. Maybe I should pause for some reflection on this. I hope you can move forward with treatment after the discovery and hope the delay didn't make things worse.
     
    Last edited: Sep 4, 2017
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  16. Sean

    Sean Senior Member

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    Agree that the diagnosis of CFS is a double edged sword.
     
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  17. Jeckylberry

    Jeckylberry Senior Member

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    I still find it alarming how quickly they arrive at their diagnosis and how flawed it is. For instance last week during the examination he told me to walk heel to toe which I couldn't do, then when I was lying down got me to put heel to shin and run down the length. Later he tells me if i shouldn't be able to do heel to shin if I can't do heel to toe walking.... huh? I can do heel to shin when upright. That's not an equal test! Surely it would be at least that if you're trying to find a hole in my consistency. My physio friend says lying down is completely different in a muscular exertion sense anyway and walking heel to toe is nothing to do with muscular involvement of heel on shin test.

    And when he put a finger up to my face and said follow my finger and I had trouble he said, 'now I know you can move your eyes so don't make like you can't... excuse me?? I've had double vision at close range for twenty years so it's hard to see something that close in my face never mind something moving! It always takes a few seconds to adjust, then the muscular effort to adjust makes me tired out. If only someone could understand that!. So don't talk to me like I'm being hysterical. They may hide it, but they still think you're somatising and basically being silly.
     

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