I AM ANGRY ....Pyschogenic lazy bleeping doctoring...
After my hours of crying, I decided to post.
I don't know what anyone is going to think of me here?
After seeing the Neuro a total of TWO times and then today, he's decided
he's giving me a dx of Psychogenic Movement Disorder.
He recommended that I see a psychologist.
We (my husband and I ) totally disagreed with him and told him so.
Asked him WHY....he said that Neuro Psychology isn't his specialty, so he can't answer that.
Then why refer me to something he doesn't understand himself.
I am NOT going to a psychologist. I don't need one.
I am not depressed, other than this condition (or conditions - Gastro or Endro) I have.
I have no underlying Psychological issues.
I asked him if he wants me to go to a psychologist and make things up.
Supposedly these psychologists can get to my hidden subconscious issues.
It's not that I'm against therapy....It's just I don't need it!
The ONE and only reason I am depressed came with this condition.
I was enjoying my life up to this point.
And the last while I've done a fairly good job of talking myself into coping with it.
I said to him, I also have another health condition that's in the process of dx. If psychogenic is possible, isn't it possible as well that my other health condition has taken such a toll on my body
that that might be the cause.
At first he didn't understand the question.
Then he said "there's none that he knows of".
Well....do a 1 minute search on the Internet and come up with a bunch!!
I'm going to figure out what to do about this. Or cope with it or whatever.
WITHOUT a psychologist.
My adult children are furious. And completely agree with me. So that made me feel better.
What do I tell people now? People are going to look at me like I'm a psychiatric case.
When I first met this Neuro, I said "thank for you for not saying this is stress"
Today he said "Do you remember the first thing you said to me"
And I said "yes about stress"
Obviously it's what remained in his head!!
Elaine
I don't know what anyone is going to think of me here?
After seeing the Neuro a total of TWO times and then today, he's decided
he's giving me a dx of Psychogenic Movement Disorder.
He recommended that I see a psychologist.
We (my husband and I ) totally disagreed with him and told him so.
Asked him WHY....he said that Neuro Psychology isn't his specialty, so he can't answer that.
Then why refer me to something he doesn't understand himself.
I am NOT going to a psychologist. I don't need one.
I am not depressed, other than this condition (or conditions - Gastro or Endro) I have.
I have no underlying Psychological issues.
I asked him if he wants me to go to a psychologist and make things up.
Supposedly these psychologists can get to my hidden subconscious issues.
It's not that I'm against therapy....It's just I don't need it!
The ONE and only reason I am depressed came with this condition.
I was enjoying my life up to this point.
And the last while I've done a fairly good job of talking myself into coping with it.
I said to him, I also have another health condition that's in the process of dx. If psychogenic is possible, isn't it possible as well that my other health condition has taken such a toll on my body
that that might be the cause.
At first he didn't understand the question.
Then he said "there's none that he knows of".
Well....do a 1 minute search on the Internet and come up with a bunch!!
I'm going to figure out what to do about this. Or cope with it or whatever.
WITHOUT a psychologist.
My adult children are furious. And completely agree with me. So that made me feel better.
What do I tell people now? People are going to look at me like I'm a psychiatric case.
When I first met this Neuro, I said "thank for you for not saying this is stress"
Today he said "Do you remember the first thing you said to me"
And I said "yes about stress"
Obviously it's what remained in his head!!
Elaine
Replies to This Discussion
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Permalink Reply by Rebekah on -
If you go see a psychiatrist or get an eval, they will not be able to dump you as a psych case anymore.
Many people on here have done the same, because Dystonia is often misdiagnosed as psychogenic and/or conversion disorders.
It may be worth taking that road.
Otherwise, you might just choose another neuro and start again.
The only problem is, psychogenic is now in your records. It will likely cause problems unless you disprove it.
I'm sorry Elaine. It is a very painful suggestion to deal with, but know you're not alone in this!!
We've been there before you. Take a deep breath and keep on pushing!!
Hugs back to you!!!
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Permalink Reply by ramona on -
Keep in mind that you DO not have to tell other doctors of that diagnosis, though. After getting a psychogenic diagnosis I went on to other docs and just did not give them those records or tell them I had been to that particular doctor. You choose what to share. It might be different in Canada, though...
Blessings
Ramona
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Permalink Reply by Elaine on -
My movements have had a progression.
They began as tremors, mycolonic and dystnoia..
They were not as aggressive until I was put on seizure meds OVER THE PHONE, through my GP, by a
Neuro I had NEVER seen.
The seizure meds made me so tired I felt like was almost not in this world
anymore. That's how drugged they made me.
My episodes are brought on specifically by fatigue. In my opinion, it's reasonable then to think that while being on the seizure meds, which did not work for me and caused such extreme fatigue, that they would actually bring on more severe more aggressive episodes.
So what did my GP do....STILL without me seeing a Neuro yet, but raise the seizure meds....and I continue to get worse.
Once I was off the seizure meds, the episodes became more like they are now.
I tried to explain that to the Neuro yesterday, but I don't think he paid much attention.
He had 2 videos of me. I told him there are 3, and he only has 2 and 3.... and the other Neuro had kept the first one. I told him about what the seizure meds did to me.
He just looked a little baffled about their being a first one, ignored what I said about the seizure meds and kept on going with his psychogenic bull.
I believe I am going to slip through the cracks because of them not paying attention.
Maybe I need to make contact with that Neuro today and be more assertive.
Or tell my family GP this same story and ask to see a new Neuro and start fresh.
Elaine
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Permalink Reply by asburyparkangel on -
Dear Elaine
I weep as I vicariously read your suffering. My prayers are with you, dear friend & all who struggle with this wicked disorder. It seems that most with other aliments get relief with pain killers, but it seems Dystonia victims get NONE! For me, information, research and faith in God is ONLY respite. I've had to suffer quite a few aliments and conditions in my life, Lyme Disease, severe hay fever, Candida, Bronchitis and pneumonia, mysterious rashes, chicken pox, but none so devastating as this movement disorder.
I’m blessed & comforted that God is my hope, (I’m still baffled about having to suffer so much), GOD is Dystonia, Lymes and all debilitating condition’s victim & a hope in time of need. Where else can I go? TRUST me, its futile to trust in orthodox medicine. I too have endured disdain by doctors who have misdiagnosed me. These doctors are trained to prescribe the common drugs, making little effort to discover new breakthroughs, supplements and protocols, (alternative/homepathic). My new, Lyme doctor wasn’t even familiar with the Marshall protocol, (when I asked him) & he is supposed to be the BEST in NJ??? God help me! We must inform our own selves via the internet and PRAY Hard for God’s wisdom. Don’t leave Him out of the equation.
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Permalink Reply by Mindjet on -
http://www.mayoclinic.org/dystonia/diagnosis.html
Elaine, what are your other health conditions you referred to in your post? You may find the above link to the Mayo Clinic's piece on Dystonia above helpful.
I would get additional medical opinions and consider including the Mayo Clinic or other highly regarded medical treatment/think-tank authority as one of them.
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Permalink Reply by Elaine on
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THANKS Rebekah and Mindjet for understanding.
I will see a Gastro (too hard to spell - lol) on the 25th for bowel problems.
I have diarrhea almost every day. I was taking a lot of Imodium and my Dr said to stop.
It only gave me a small amount of control and never actually controlled it fully.
So I have stopped for several weeks now. I have days where I am so sick because I can't eat and the
diarrhea is so bad. Minimum of 6 x or more a day.
So now I'll be going through all that testing.
I'm also on a waiting list to see an Endocrinolgist (spelt wrong, but I tried. lol)
For awhile my parathyroid was going up and and now it's starting to go down.
So that may not be an issue after all. It might have to do with the Gastro problems.
Neuro says he doesn't know of any movement conditions with parathyroid.
I could send him an article right now and have him learn one!
When we asked the Neuro what we could do about the choking....he looked at us blankly....had NO
ideas. I even offered suggestions like heat to give him an idea of what we were asking..???
He said "Well keep doing what you're doing?"
We said "We don't know what to do".......very frustrating.
He's talking about stress, caffeine...and so on....I asked for the garbage can to throw in my kleenex and it's
filled with the X L size coffee cups. I said "Now that's a lot of caffeine".
He actually seemed embarrassed by it.
My only option is that he'll give all info to his superior Neuro for a 2nd opinion and if that one MIGHT
agree to see me. I said that's what I wanted for now.
I don't trust psychiatrists either. I did have a psychiatrist about 14 years ago. I had to go through at least
5 to get that one good one. I don't feel like humouring them.
Elaine
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Permalink Reply by Elaine on
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A concern I have is that I was tested for Wilson's Disease
And my copper levels came back high.
So I was tested again and the 2nd time the Neuro said it came back normal that time.
I wonder.....if I should see an eye Dr to have them check my eyes...just as a precaution.
It can't hurt anything.
It would show if I had copper rings.
I feel the Drs don't take into concern the too high or too low blood tests....but grasp onto the
ones that are normal or "almost" normal.
Cause I have a few out of whack.
My sed rate is high.
I've looked it up.
A female age to 49 their level should be 20.
50 and up...they raise the level to 30.
Well I only just turned 50....and my level came back at 36! Almost double too high if I was 1 year younger, at 49!
My friend who is coming over tomorrow to help me, was also a nurse. I'll have to ask her about this.
Elaine
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Permalink Reply by asburyparkangel on
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According to my research, Dystonias are caused by toxins, (which include pesticides, carbon monoxide, anti-histamines, auto exhaust, chemicals in household products, etc). I worked with airplane glue and spray paint when I was in my twenties and never imagined that taking Chlor Trimetron allergy tablets as a yong woman would cause this disorder. I also had a mercury filling left in my mouth, ( from my foster-child years). Mercury is HIGHLY toxic and cause terrible damage to the body. Also check for LYME which is the GREAT imitator that imitates Lupus and a host of other ailments. Hair analysis are excellent to detect heavy metal. Mainstream doctors will not look into these procedure, but you life depends on it. Oral chelation and detoxifying through FAR saunas is crucial to rid the body of accumulated poisons. “DETOX or DIE” by Doctor Sherry Rogers is crucial reading to educate yourself about body poison load.
.NUTRA-Sweet & Splenda are highly toxic as well as high-fructose corn syrup in sodas & snacks. EDUCATE yourself. You’ll also have to eat only organic foods and pure spring and distilled water. Your whole lifestyle will have to be OVERHAULED. Do it of DIE! I pray you will profile and have divine health with this info I’ve applied to my life. God bless you! You can google me and read my blogs & health info.
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Permalink Reply by lisa w on -
birthdays don't equal physical age. Seeing an optician to look for the copper deposits is not a bad idea. Sometimes with Wilsons the copper levels can vary. Did they check your liver functions?
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Permalink Reply by ramona on
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Elaine,
Sadly, we are not surprised by this diagnosis, but we share your frustration. Most of us have been there at one time or another. Please don't give up. Regarding what to tell your family, you might just tell them that the findings were "inconclusive" or something like that. Those who would understand, you can be honest with and share your frustrations, though.
I also refused to see a psychologist, as I simply did not need one. I have a number of friends who are trained counselors and they all agreed that I was not depressed. Interestingly, when I was eventually referred for DBS surgery and had to have neuropsych testing for that, I "could not have passed with any more flying colors", according to the technician who did the testing. That, at least, proved my point, although it was a bit delayed...
Blessings
Ramona
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Permalink Reply by Elaine on
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Thanks Ramona,
I know I don't need a psychologist. This feels like I've been thrown into The Twilight Zone.
This Dr said he'd given 3 such dxs that day!
And he had to admit I'd handled it so well!! I guess the others showed their anger a lot more
than I did.
If it's such a "rare" dx to give....how do you give THREE in one day!!
Elaien
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Permalink Reply by lisa w on
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Elaine that Dr is stuck in a rut. I can't imagine any Dr except amovement disorder specialist Dxing dystonia of any kind at a rate of 3 per day. Sounds like he can't admit if he doesn't know something. Is his head extremely large?lol I'd say run as fast as you can to a different Dr. This guy has a problem. One of the most frustrating things of having dystonia if you have done any research you probably know more about it than most Drs unless they specialize in movement disorders. and I wonder about some of them. they haven't lived with it. I have heard of one specialist that does have dystonia.
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