Aa
You will never believe this one!!!!!
Ok, I went to Jefferson Neuroscience hospital today. My wife had called them in desperation after the primary disowned me. The neuro takes one look at how I can't lift my legs off the floor, the reports from my brain MRI's, and says,"this looks like MS". Then he has me walk in a straight line and I am swaying, losing my balance. Then he does an exam....WAIT, he says. Your reflexes are dull, not hyper reflexes!!! So here comes the BAD NEWS> He says," I may have to change my mind about your diagnosis".
He then proceeds to go and look at my brain mri films. He comes back and says that the brain atrophy is normal for 50 years old, and most people have white matter disease and lesions. Then he tells me that I should be happy because it is better to NOT know what you have then to have a MS diagnosis. I asked why? I want treatment before I am in a wheelchair!! He said to trust him...he sees really deteriorated patients and it is better to have a doctor say you are ok.
then he really made my blood boil when he proceeds to tell me that I am still trying to work (my four hour days you idiot) and if I am willing to work then why should he think I am deteriorating. I told him that I can't run, jump,swim and can't even go for a walk with my kids. i am trying to support a family . He knew I was getting upset (boy what a revelation) and then agreed to order evoked potentials testing and a thoracic MRI. He also ordered a neuro psych test.
Then he said that if these tests indicate a tendency toward MS don't think he will give me a MS diagnosis. My wife asked him if he would like me to go on disability because it is so hard to keep going and if it would look better to a doctor to be on disability, then I could certainly do that. (she is a bit sarcastic when she is frustrated with a doctor). He did not answer and then later said he understands my frustration.
Isn't this similar to what happened to Penn the second visit at CCF? I can't believe this...do doctors deliberately set patients up to become disabled???? Should I keep trying and go for more opinions??? Thanks for listening.....Craig
He then proceeds to go and look at my brain mri films. He comes back and says that the brain atrophy is normal for 50 years old, and most people have white matter disease and lesions. Then he tells me that I should be happy because it is better to NOT know what you have then to have a MS diagnosis. I asked why? I want treatment before I am in a wheelchair!! He said to trust him...he sees really deteriorated patients and it is better to have a doctor say you are ok.
then he really made my blood boil when he proceeds to tell me that I am still trying to work (my four hour days you idiot) and if I am willing to work then why should he think I am deteriorating. I told him that I can't run, jump,swim and can't even go for a walk with my kids. i am trying to support a family . He knew I was getting upset (boy what a revelation) and then agreed to order evoked potentials testing and a thoracic MRI. He also ordered a neuro psych test.
Then he said that if these tests indicate a tendency toward MS don't think he will give me a MS diagnosis. My wife asked him if he would like me to go on disability because it is so hard to keep going and if it would look better to a doctor to be on disability, then I could certainly do that. (she is a bit sarcastic when she is frustrated with a doctor). He did not answer and then later said he understands my frustration.
Isn't this similar to what happened to Penn the second visit at CCF? I can't believe this...do doctors deliberately set patients up to become disabled???? Should I keep trying and go for more opinions??? Thanks for listening.....Craig
Hi, I don't think it would be a bad idea to tell him a couple of the totally absurd ways you have been dismissed. Be brief and not too derogatory, but appeal to his intellect to put together a complex story. I think it is ridiculous to tell someone to just keeping deteriorating, because no one will ever figure it out. Keep the letter fairly brief, he is the single busiest doc I have ever seen.
and Lynn - There is a superb piece of equipment which is a seated, stepper with back/forth handle action for the arms so that the work can be equally distributed between all four limbs. I love it. It is comfortable and if the legs are weak the arms take up more of the action and vice versa. It's called the NuStep. If it wasn't $3,500 I'd get one. Craig, I would certainly reccomend that you try one. I've seen them in gyms, and it was the major piece of equipment used by the large PT department I went to, in their neuro section.
Quix
and Lynn - There is a superb piece of equipment which is a seated, stepper with back/forth handle action for the arms so that the work can be equally distributed between all four limbs. I love it. It is comfortable and if the legs are weak the arms take up more of the action and vice versa. It's called the NuStep. If it wasn't $3,500 I'd get one. Craig, I would certainly reccomend that you try one. I've seen them in gyms, and it was the major piece of equipment used by the large PT department I went to, in their neuro section.
Quix
I am currently working on the letter to Dr. Morrow. I am using some of the things you said, about how the disease is taking away my life and how I can no longer do anything with my kids. I have copies of the mri's and everything should go out fed ex two day on Monday.
T-Lynn,, are you able to pedal an upright stationary bike? I am currently in physical therapy but I can only do a bike that is reclined....thanks for everything...Craig
T-Lynn,, are you able to pedal an upright stationary bike? I am currently in physical therapy but I can only do a bike that is reclined....thanks for everything...Craig
I'm at work now but will post the exact title and publication date. If it is the same manual, and I believe so i will point you at the paragraph I was refering to. It is only referencing the general population and speaking in general terms about who is more likely (professions) to be faking a symptom. And no, no one in their right mind would trade a good career for SS disability. This was refering to claims and litagation more than anything else.
It does have hundreds of references after each chapter, thousand in total. Probably 500+ pages, and I would imagine easily $150 in value, maybe triple that in a medical school bookstore.
Give me a few hours to get you the info and see if we are talking about the same manual.
Johnny
It does have hundreds of references after each chapter, thousand in total. Probably 500+ pages, and I would imagine easily $150 in value, maybe triple that in a medical school bookstore.
Give me a few hours to get you the info and see if we are talking about the same manual.
Johnny
I'm also part of the MacLaren clan on my mom's side, also Kennedy, Hanlon, McKinney, (some irish in there too). Q
Don't look at as chasing a ghost,you're seeking a DX.Your primary seems to be a real dork.
Your friends that are in the medical community are true friends.
Don't give up on your legs,I almost did and I sure am glad that I got persistant and pushed forward with them.I was told by a neuro to plan on getting a wheel chair.No thank you.I have joined a fitness center and I started out on a bike and the lady that works there would push the pedals to make them go around and after a few weeks I could slowly do it myself.Now I ride it for about 25 minutes on the lowest speed and I never get past 3 miles.We do the treadmill and she stays right beside me and makes sure I don't fall,that machine is short lived and we do the leg press only 11 pounds and she has to place my legs on the machine.
I went to my sons football game tonight and when I was standing at the end my legs were rubbery and a shaking.
Please persue all avenues,you deserve a proper dx.
T
Your friends that are in the medical community are true friends.
Don't give up on your legs,I almost did and I sure am glad that I got persistant and pushed forward with them.I was told by a neuro to plan on getting a wheel chair.No thank you.I have joined a fitness center and I started out on a bike and the lady that works there would push the pedals to make them go around and after a few weeks I could slowly do it myself.Now I ride it for about 25 minutes on the lowest speed and I never get past 3 miles.We do the treadmill and she stays right beside me and makes sure I don't fall,that machine is short lived and we do the leg press only 11 pounds and she has to place my legs on the machine.
I went to my sons football game tonight and when I was standing at the end my legs were rubbery and a shaking.
Please persue all avenues,you deserve a proper dx.
T
Hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm.........................I'm not sure we are talking about the same book! This is a highly technical (some parts are way beyond me) treatise bringing together all the current theories and research on MS and discussing which ones are showing the most merit. It has 1000's and 1000's of references.
It's called officially:
Handbook of Multiple Sclerosis, 4th ed.
Edited by Stuart D. Cook, MD
copyright 2006
I have come across nothing NOTHING that even sounds like what you mentioned. I would have burned it!! crying of course, because it set me back over $150.00!!! This is really a technical reference for neurologists.
The notion and history of medical professionals faking symptoms is this. All psychopathologies occur in all professions. People range from honorable and brilliant, earnest and ethical, just making do, lazy and inept, negligent, fraudulent and psychotic. There is a phenomenon known as Munchhausen's and Munchhausen's by Proxy. Typically these people have greater than average intelligence and knowledge of medical science. The first one, they fake symptoms and some have been known to obtain 30 or more surgeries or other invasive procedures. The gain is the attention from the medical staff. The second is when a caretaker fakes the illness in another - a child or an mentally diminished elder, for the same reason of attention. I've come across and documented about half a dozen "by proxy" cases. They would curl your hair!!
That this would even be discussed in a general book about MS is ridiculous unless it would be covering the entire gamut of psychiatric conditions that present in neurologic disease.
By the way, this was essentially what my old neuro broadly and repeatedly implied about me. That I was faking my symptoms, even though he could document things that are unfakeable. Sheeeesh!
People who have this pathologic need to hurt themselves for attention do it in the way they know. Thus, medical faking will be seen in that disturbed portion of the health care workers (typically not MDs or RNs - usually people more peripherally associated with health care, but with access to info). Others may confess to crimes they didn't commit. Disturbed kids will injure themselves to gain attention.
I do agree that it is not a wise or diplomatic approach to begin your relationship with a new neurologist showing that you know a ton about a certain disease. Part of the problem is the "affront" to the ego and the other is the sense on the doctor's part that he/she will have to diagnose you "despite" what you believe and may have to try to convince you it is something else if that is what the evidence shows. People who come in totally married to a diagnosis are very difficult for the doc, of course unless they are right. Then it is easy. I speak from experience.
Well, I've rambled on long enough. I have to cut and paste this for Angel because the notion that docs and nurses would fake to have a disability sent her sky high....understandably.
Craig - I really don't know about the NPH. I certainly am not qualified to be a neurologist at NIH. I also feel anger and disillusionment for you. Have you already written sent the letter to Morrow?
Quix
It's called officially:
Handbook of Multiple Sclerosis, 4th ed.
Edited by Stuart D. Cook, MD
copyright 2006
I have come across nothing NOTHING that even sounds like what you mentioned. I would have burned it!! crying of course, because it set me back over $150.00!!! This is really a technical reference for neurologists.
The notion and history of medical professionals faking symptoms is this. All psychopathologies occur in all professions. People range from honorable and brilliant, earnest and ethical, just making do, lazy and inept, negligent, fraudulent and psychotic. There is a phenomenon known as Munchhausen's and Munchhausen's by Proxy. Typically these people have greater than average intelligence and knowledge of medical science. The first one, they fake symptoms and some have been known to obtain 30 or more surgeries or other invasive procedures. The gain is the attention from the medical staff. The second is when a caretaker fakes the illness in another - a child or an mentally diminished elder, for the same reason of attention. I've come across and documented about half a dozen "by proxy" cases. They would curl your hair!!
That this would even be discussed in a general book about MS is ridiculous unless it would be covering the entire gamut of psychiatric conditions that present in neurologic disease.
By the way, this was essentially what my old neuro broadly and repeatedly implied about me. That I was faking my symptoms, even though he could document things that are unfakeable. Sheeeesh!
People who have this pathologic need to hurt themselves for attention do it in the way they know. Thus, medical faking will be seen in that disturbed portion of the health care workers (typically not MDs or RNs - usually people more peripherally associated with health care, but with access to info). Others may confess to crimes they didn't commit. Disturbed kids will injure themselves to gain attention.
I do agree that it is not a wise or diplomatic approach to begin your relationship with a new neurologist showing that you know a ton about a certain disease. Part of the problem is the "affront" to the ego and the other is the sense on the doctor's part that he/she will have to diagnose you "despite" what you believe and may have to try to convince you it is something else if that is what the evidence shows. People who come in totally married to a diagnosis are very difficult for the doc, of course unless they are right. Then it is easy. I speak from experience.
Well, I've rambled on long enough. I have to cut and paste this for Angel because the notion that docs and nurses would fake to have a disability sent her sky high....understandably.
Craig - I really don't know about the NPH. I certainly am not qualified to be a neurologist at NIH. I also feel anger and disillusionment for you. Have you already written sent the letter to Morrow?
Quix
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