I AM ANGRY ....Pyschogenic lazy bleeping doctoring...

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Permalink Reply by marie on October 25, 2009 at 11:18pm

dear rosemary-thats where i need to count my blessings.even though im homebound,require help with most my adls,depleted all our resources since i had to retire and must private pay all homecare because its custodial...my husband has been supportive.he gets frustrated when drs say stupid things.im sorry your husband walked out.marie

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Permalink Reply by Rosemary on October 26, 2009 at 11:22am

Good luck, Marie. Keep at it and keep us posted.

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Permalink Reply by Rosemary on October 28, 2009 at 8:45pm

Hi Elaine: Me again. This preview is from a very good book called The Dystonia Patient. It you read a bit of the pages in this chapter you will see how important a Psychiatrist can be in treating Dystonia. You can probably get a preview of the Psychologist discussion if you google the book title with "Psychological considerations." I know you have a hard time with the "Psychogenic" diagnosis, but I don't think that should discourage you from seeing a Psychiatrist. We are all different, but Cymbalta made a huge difference in my quality of life and the Psychiatrist may even help you in disproving/countering the "psychogenic disagnosis".

http://books.google.com/books?id=XnS-Nyhi3ZUC&pg=PT229&lpg=...

All the best, R

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Permalink Reply by Elaine on October 30, 2009 at 12:40pm

TODAY (Friday Oct 30) I began my in hospital physio therapy.
I had been seeing a private therapist but they felt they could not accommodate someone in my condition.
This is physio that is for my pending fibro dx.

The hospital appt was early. 7 am. I was very tired. And the evaluation was exhaustive.
It brought on a few bad movement episodes.
The therapist asked what sorts of tests I had through the Neuros. ALL I ever had was a head MRI, an EEG and blood work.
She asked what the Neuro is doing to treat me now. I told her nothing and that they've closed my file.
She doesn't feel that I've had proper care or full testing available.
She is sending me to another dept in the hospital and having more testing done.

I am glad that I have stuck to my guns over this psychogenic bull.
Once my GP had heard "psychogenic" from the Neuro...she used it to cover everything.
If I hadn't stuck to it, then my GP would have had me going to a psychologist for an upcoming dx of fibro,
as my body deteriorates.
I'm not wasting anymore time to humour Drs.

I've lost 2 summers in a row to my present illnesses. I don't plan to lose a 3rd.
Elaine

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Permalink Reply by Rosemary on October 30, 2009 at 1:19pm

Yes, a lot of time other health care types- PT's, Psychologist, Psychiatrist- can be very helpful in dealing with other MDs/medical process in the face of dystonia

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Permalink Reply by Elaine on October 30, 2009 at 1:39pm

I went back and reviewed a few posts.
For ME personally I respectfully and in a friendly way : ) , disagree with going to a psychologist.
For me....not for everyone.

I really do believe in the benefits of psychiatrists , psychologists and therapists.
And have benefited in the past.

I've had past illnesses that I've dealt with. Other losses.
Our daughter has special needs. I've got coping skills up the wazoo. LOL

I have my head on really straight about my present condition (s).
My movements are not bad on a daily basis. I know what brings them on. I'm prepared to live with them.
I do expect a proper dx though...and will never agree with the present Neuro.

The (awaiting final dx) Fibro has a more severe affect on my life. I went to a support group once. A few weeks ago. I didn't gain anything from it.
I'm just not a person to make time to talk about my illness.
I'm NOT saying this about anyone else. I'm speaking only for myself and my way of thinking.
For me my illness is just ONE part of me. I feel I get enough support from groups like this.
If I want to know something I come and ask.
I also try to offer support to others.

Someone from the Fibro support group (the one I went to) was trying to convince me to see a psychologist. I told her as well that it's not for me.

There was a time when I did feel very depressed over these illnesses. And I did ask to see someone and I was told there was no one. I got through it on my own.

IF I ever feel so depressed or feel that I wasn't coping, I'd jump at the chance to see the psychologist.
But for me right now....it's not what I need.
The physio is what will help me now.

Elaine

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Permalink Reply by Monica Coogan on October 30, 2009 at 5:35pm

Hi Elaine, I'm Monica in New Orleans, LA. I can COMPLETELY relate to what is happening to you and apparently, many others.My husband (an army vet) of four months has had Dystonia, seizures, ataxia, myoclonus, and severe anxiety for the past four years (now it is only dystonia). He has been wheelchair bound more times than I can count due to severe dystonic movements in his legs and other areas, bad tremors, grand mal seizures, vertigo, and just plain not being able to walk. It came about after he overdosed on Heroin on Xmas Eve 2005 (he was 19). He went to the ER and he wasn't having seizures or dystonic reactions UNTIL they administered 6mg of Ativan for withdrawl, I suppose because they assumed he was a chronic user (it was a one-time use relapse). So that led them to give him about 7000mg (!!!!!!!!) of depakote (valproic acid) to stop seizures. And then Warfarin and possibly Dilantin. It all started from there. Then everything seemed to just snowball. They gave him so much medication (he's kind of a big guy) that doctors who saw him said he should be dead or in a coma. They kept giving him more things to treat the side-effects of all the other meds, and then those caused more side-effects, and so on. He spent about 3 years on extremely high doses of badly interacting medications including antiepeleptics, antiseizures, anxiolytics, benzodiazepenes, antiemetics, dopaminergics, antidepressants, SSRI's, and anticonvulsants (all known to be dystonia-producing). At any given time all of these were mixed. And no, I'm not exaggerating. He has probably been on about 30 different medications over time, almost all in crazy high doses. So his condition flucuated so much, ranging from being able to jog a little bit to not being able to move and barely seeming conscious, nobody could figure out why. Apparently, nobody knows how to connect the dots, and it seems as if the doctors he saw slept through drug-interaction class. So the last neurologist he saw not only ruled out hypoxic brain injury (which is fine and maybe correct), he refused any tests for dystonia and sent him to a hypnotherapist and then to a psychiatrist, who we are seeing now. You can probably guess what his "diagnosis" is. Yes, Conversion Disorder and/ or Psychogenic Dystonia. LOLLLLLLLLLLL YEAH RIGHT! So I finally had enough, and about 5 days ago I started researching Dystonia, drug-induced dystonias, and all the meds he took and their interactions. I showed his psychiatrist and thankfully he was receptive and somewhat in agreement with me, though he disregarded the side effects of the meds that I found, saying he never heard of that. He agreed that my husband may benefit from Levadopa, but wasn't comfortable prescribing it since it wasn't really in his field of expertise. So he did something very nice and called the best neurologist in the state (and one of the best in the world) and made sure we got an appointment. We are looking very forward to that. I was able to piece together specific groups of meds that he took at different points in time, the dosages, why they they gave it to him, and the side effects and interactions. I will be presenting it to the neurologist, so wish me luck. The thing that supports my theory is that he is off almost every drug that can induce dystonia, excluding 2 (clonazepam and primidone), but at pretty low doses. He is also on suboxone and paxil, which would boost his dopamine and serotonin, which is necessary in treatment of dystonia. Now the only thing that happens is that he walks very carefully and if he gets startled then he will lock up and fall. It's nowhere near as severe as it used to be, but still dangerous. Just 2 weeks ago he fell and split an artery in his forehead. So that is my dilemna with dystonia. Has anyone else here had an experience with drug-induced dystonia? Or even a resource about it? Anything I can collect for the neurologist will be helpful to us. Thank you, and take care

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Permalink Reply by Jenn on October 30, 2009 at 5:57pm

Question for clarification> where did you read that clonazepam can induce dystonia? It is commonly prescribed for dystonia.

Good luck with your neurology appointment!

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Permalink Reply by Monica Coogan on October 30, 2009 at 6:08pm

It only happens when administered in high doses (he used to be on 8 mg), and/or mixed with other meds. What I meant to say was ataxia, concerning the Clonazepam. Sorry I was unclear. I knew that Clonazepam has about a 15% effectiveness for dystonia when administered correctly, but in his case it definitely was not. Anything else unclear? I kind of went on a rampage and probably left things out lol.

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Permalink Reply by Jenn on October 31, 2009 at 2:58pm

makes sense now :P You had me scared for a moment ... =)

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Permalink Reply by Monica Coogan on October 31, 2009 at 4:30pm

haha yeah well it's still rather scary

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Permalink Reply by Elaine on November 1, 2009 at 10:50am

Monica,
Sorry I didn't reply. I haven't been getting posts. But I think I have it solved now.

I hope you are able to get the help for your husband.
Where is the new Neuro located?

I'm in Canada. The Neuro said to me that he could send me to The Mayo Clinic, but he won't. He says he feels they gave me proper care, so he won't send me.
Our Gvt would pay for me to go to Mayo if the Neuro would recommend it.

The hospital physio therapist is sending me for further testing. So I've found my way around that Neuro anyway.

I can't offer any help with meds induced dystonia.
THOUGH I do believe for myself, that when the Neuro had me on seizure meds ( I don't have seizures) that
the meds made my episodes much worse.
When I was off the seizure meds my movements improved. But the Neuro wouldn't address that.

Sending you best of luck that all works out.
Elaine

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