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

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Permalink Reply by beka on September 24, 2009 at 2:06pm

Hi Elaine -
He was testing your fine motor skills with finger-nose touching. Next time correct him - Dystonia clearly lessens if one is distracted...The brain can do more than two things at a time.. Do we not eat, sit at the same time which requires multiple coordination and cognitive -performance skills...lets then put in chewing our food and swallowing it ? May be , I am wrong...?

beka

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Permalink Reply by Rebekah on September 24, 2009 at 2:52pm

"Dystonia clearly lessens if one is distracted"

BEKA! Is this true? That's the only reason the neurologist at the mayo phoenix (not an MD specialist) gave for writing that he thought my dystonia was psychogenic. I subsequently saw 2 psychiatrists and a talk therapist who all disagreed, but I still have to deal with his silly note every time I see another doc... It opened a huge can of worms and I was pretty sure I wasn't changing beyond the movements shifting when I tried to move anyway.

Wow.

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Permalink Reply by Elaine on September 24, 2009 at 4:33pm

Here's the other stories he gave me of other patients.
Fight or flight examples he said.

One story was a hawk coming down to kill me. But I have another person to defend.
So I don't "flight". I stay and fight to help. But I've put stress on myself.
I guess my saying I'm strong is my fight. And is supposedly causing me stress?? I don't know??

Another was a young woman was almost comatose. They could poke her feet, etc and she wouldn't budge. Just stare blankly ahead. It turned out that one of the people visiting her had molested her as a child. So she was avoiding the situation. Subconsciously.
You want to ask 'HUH???"" And that has WHAT to do with me??

I am not avoiding anything subconsciously. I've had therapy. Dealt with any issues I had.
Applied them to my life. Even try to pass on what I've learned to others.

I'm REALLY being pressured by the Neuros and my GP. REALLY PRESSURED.

It's really upsetting to me to think of revisiting past traumas again.
There is only ONE thing I want to "flight" from and it's the Neuros and a psychologist.
If I'm not depressed now I will be if they force me to do this.
My GP says if I don't do it that I'm not fully participating in my getting well.
I FEEL TRAPPED.
HOW DO I STAND UP TO THEM???

STRESS - Tomorrow Alexis (our 10 year old) has her 12th surgery. She does not want it and is really putting up resistance. She's made this a bad day. It's really getting on my nerves and I do feel stressed. But I'm not having any episodes.
FATIGUE is what brings on my episodes. NO ONE will listen to me.

What was said by the Neuro....is stress causes the fatigue. Then fatigue causes the episodes.
So it's stress.

The only thing the Neuro said was that I may have an Endocrine condition that is causing my other symptoms. But not the movements.
My GP doesn't think I have an Endocrine or auto immune condition.
The Gastro thinks I have another condition. He's the one that suggested a Rheumatologist...which I am on a waiting list for. Gastro dxed me with Colitis.
My head is spinning!
WHO do I listen to???

Elaine

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Permalink Reply by Karen B on October 6, 2009 at 8:00pm

Elaine,

We Had our appointment in London Ontario today with a Dr. who specializes in Conversion disorder. He told us that our Daughter Does NOT have conversion Disorder, in fact he is quite upset that all the doctors have left us hanging only because the Conversion was mentioned. He said that of all the patients that are referred to him for conversion he DISMISSES 85% of them as NOT having conversion. He spoke with Kelby and had a really good discussion with all of us. He feels that our Doctors are "Trying to put a square peg in a round hole". He is going to have his partner meet with Kelby, who is a phsycologist but he is almost certain that his partner will concur with him. He said Conversion is such a tricky diagnosis, and almost impossible to diagnose. There is a few things he is going to investigate further and then get back to our medical team and tell them to do something with her, and wake up and realize it is infact DYSTONIA. This is the first visit in 2 years where we haven't left feeling helpless and alone.

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Permalink Reply by Elaine on October 6, 2009 at 9:34pm

Karen,
I'm really happy to hear that you have a Dr that will take your daughter seriously. It must be very hard for a teenager to go through such an experience.
I'll be thinking of her and hoping it goes well.
Maybe I should come to Ontario.

In my last post, the Neuro (I'll call him 2) that I saw was the "second opinion" Neuro. In the same office as the first Neuro (1) who said "psychogenic.

Neuro 2 said that he wasn't taking any info from Neuro 1. That he wanted to form his own opinion. But he made comments that made me aware that he did take info from Neuro # 1.

A busy week for me this past week.

Wed - I had to make a trip to Emergency. Because I am such a tremendous amount of pain that I couldn't take it anymore.
The ER Dr put me on Dilaudid. A very strong pain killer. And Amatripaline (sp?) for the night.
What a huge relief. I have been dismissed for so long that I didn't realize how much pain I really was in.
The ER Dr said he felt that I have an auto immune condition and that my main dx will
be made by the Rheumatologist. That's my Oct 13th appt.
I had several movement episodes at the hospital.

Thursday..., Neuro 1 made the final dx of psychogenic (last week) and closed my file. He said he could refer me to The Mayo Clinic and our Medicare would pay for it, but that he wouldn't recommend it. Without him recommending it, I can't go. He said he feels I received proper care. I don't agree, but there's nothing I can do about it.
But I STOOD UP TO HIM....I said I was not going to a psychologist. That I was given the option of physio therapy and that , that I was making the choice that I felt was best for me.
He agreed that he would write a letter stating I should go for physio.

I am on a waiting list for physio. So that will get me in quicker.

Friday - I saw the Endocrinologist. She said my blood work indicates a severe Vit D Deficiency. And gave me a prescription for 50,000 units of Vit D per week.

She said the Gasto dx of Colitis may play a part in the low Vit D.
It's all coming together. So I don't care what the Neuros think.

I'd read up on Endos, high parathyroid and Vit D. So I understood everything she was saying. She complemented me on being a well informed patient. She said Vit D would make me feel better, but also agreed that my main dx most likely lies with a
Rheumatologist.
NOTHING like the Neuros who are not open to anything.

I hope so much now that the Rheumatologist gives a dx that could involve a movement. I will be sure to say to the Neuros "told you so!!".

Again....I hope it all works out for your daughter.
Elaine

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Permalink Reply by Elaine on October 6, 2009 at 9:40pm

Would this make a difference to anyone? Grabbing onto something??

When I went to the ER for pain, they gave me an ultra sound on my leg to rule out a blood clot. One leg was very swollen and hurt more than the other.

When I first arrived at the hospital the blood pressure cuff set off the movements as it does every time. I always end up all bruised because they leave it one me.

Then during the ultra sound I had a few episodes. I found a bar across the bed and hung onto that and it helps with the movements. I can still feel the movement, but I'm able to keep my arm from moving all over.
But some times it is too bad and I can't calm it down by holding onto anything.

So my question is....can anyone gain some control by grabbing onto something?
Elaine

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Permalink Reply by marie on October 6, 2009 at 10:00pm

elaine-i can gain control holding something but the catch is i get stuck in that position until someone comes.once they pry me off the movements are worse.what a life...love,marie

Permalink Reply by Canary3 on October 7, 2009 at 10:48pm

Dear Elaine Don't give up! Some of us have fought for 20-30yrs for approp.Dx. I think almost all of us have been labeled ,pyschogenic,especially when Medical Personal have little current ,knowledge in Movement Disorders. I know soon,someone will say,aha, this is what is happening to you,and then you can focus on treatment. You know your body more then anyone,and it hurts so much when a Dr. sends you off to psych. Hang in there!

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Permalink Reply by Elaine on October 9, 2009 at 3:05pm

Thanks. Canary. : ) Didn't see your actual name.
I'm doing ok with the movements. I don't have bad ones every day like many of you do.
I have a bad episode about once a week, with small ones every day.
The small ones I could hide from most people. My husband recognizes them.
The bigger episodes....I can't hide.

Right now I am focusing on my appt with a Rheumatologist. I am counting the days.
Tuesday Oct 13th.

Elaine

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Permalink Reply by deejay on October 10, 2009 at 11:48am

It makes me so mad when so called doctors make a fast judgment such as this. Who wouldn't be depressed while going through such hell. I personally would like to see one of them go through it and see if they aren't depressed after, it would, I'm sure, change their perspective. It's enough to wipe the smile off of the good humor man.

My heart goes out to you and I understand the frustration and sheer hell that comes along with this disease. I too live in Canada and I have found a doctor who listens to me and is making a huge difference in my life. He is located in Montreal, PQ. I have generalized dystonia and for a long time never thought I would ever walk or be normal again. I'm here as living proof that there is a light at the end of the tunnel. I am walking upright and the pain level has decreased dramatically. I am shocked at my own recovery, I can't believe that I am doing so well. 1 year ago I couldn't walk, sit or even lift my arms up in front of myself. I would throw cups, glasses and the attacks were unbearable. Life for me had come to a standstill. I hated the body I was in. Every specialist that I had seen had their own diagnosis, from pinched nerve, protein buildup, the twitching was caused by taking too many pills, depression and my favorite excuse arthritis. Pills upon $%^&*$% pills, none of them worked for the pain or spasms. It has changed my perspective on medical doctors.

This week I have had a major breakthrough and I haven't felt this good in 5 years. I refuse to let this disease win and I am determined to beat it.

If you are able I could give you directions and phone number to this man. I wish you the best, this disease can be beat with the right person taking care of you.

If anyone else who lives close to Montreal and is interested it would be a pleasure to send you the information. He also has patients from the US. There are 4 people in Canada who do this and he is one of them. I don't know where the other 3 are located.

luv Deb.

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Permalink Reply by Elaine on October 14, 2009 at 3:09pm

I've been to my last specialist. A Rheumatologist.
He says he will likely dx me with Fibromyalgia.
This Dr had no be side manner at all.

He asked about my other conditions. Said about the movements, but that's nothing to do with me.
I'm here to solve whatever else is wrong with you.
He didn't care if the Neuro said psychogenic or not.

When I speak to a Dr, I say I have a movement disorder with dystonia and myoclonus. I've been told by a Neuro it's psychogenic. We don't agree. But whatever the belief as to why I have it, I still have it.
Who can argue with that. lol
I get a good response to wording it that way.

I had all the blood tests to rule out RA, Schlorderma, Lupus, and a few more.
I will see this Rheumatologist again in 2 months.
At which time he expects to dx me with Fibromyalgia.
Elaine

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Permalink Reply by Cheryl Sunshine Benson on October 15, 2009 at 2:55pm

I have fibro and ME/CFS since 1991. fibro has nothing to do with movement disorders,

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