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
I think your response probably had some merit with my one recent especially quacker neuro. I was told I would only get 15 minutes for my initial exam. Also, I was trying to get a diagnosis for my disability and to help with medical test authorizations and payments. I was informed that I had to get certain items answered for medical payment reasons. So, I tried to have everything presented in a logical linear fashion with questions and I supposed it was just too much too digest. Of course, I explained when I booked the appointment that there were other possibly overlapping medical issues to discuss. As a result the neuro said no one would have that much knowledge about a medical condition unless they were a hypochondriac. He did not look at all the test results or even do a thorough neuro-exam. I expediently explained my background and why I tried to be proactive about my situation and the monetary insurance and disability questions at the beginning, especially with only a little bit of time to cover many issues and various past surgeries, etc. When I stood my ground asking him for other logical explanation, etc. he then said that he just did not know what was wrong except that MRI spinal lesions do not matter: That unless you have MRI brain lesions that someone does not have MS. And my reflexes were not hyper enough, in fact, some were diminished or absent. I was told prior to that that as many as 5% of MS sufferers do not have lesions on MRI. Autopsy has proven this. Also, as you and other have been referring to: there is nerve damage going on even without persistent lesions. Also, not all forms of MS have positive LPs or postive brain MRIs and that is how some various other MS forms or related diseases are differentiated. I would not send my dog to that quack if I could help it. What is sad is that I was told that his mother had MS and therefore he knew all the symptoms. MS is so varied and elusive at times. I really question his abilities...If the MS center reaffirms my MS or any other related diagnosis I believe I will cc him for his own education.
I was surprised the neuroradiologist gave me as much time over the phone at the end of the day as she did with his visit. She seemed genuinely concerned and logically on the same page as I was in a very professional and caring manner. Perhaps because I used to work for another radiologist that works with her. I did not tell her that. But, she made it sound like they had round-tabled my results before she had talked to me. The munchhausen part can be true: however most positive test results are valid. But, it certainly can help to stroke their ego first, I do agree.
By the way, what are the neuro-psych elements that you are referring to?
I was surprised the neuroradiologist gave me as much time over the phone at the end of the day as she did with his visit. She seemed genuinely concerned and logically on the same page as I was in a very professional and caring manner. Perhaps because I used to work for another radiologist that works with her. I did not tell her that. But, she made it sound like they had round-tabled my results before she had talked to me. The munchhausen part can be true: however most positive test results are valid. But, it certainly can help to stroke their ego first, I do agree.
By the way, what are the neuro-psych elements that you are referring to?
Craig, Quixotic, Heather, and everyone: Gosh, Can I relate to all this! The symptoms. The attitudes of neuros, etc., etc., etc. Keep you spirits up if you can, Craig! And blessed be your wife. Thank goodness I had a friend tell a medical doctor that thought I was being absurd that everything I was telling them about what was going on and my medical history was true. I have to say that for my new neuro. He tells his patients that they can tell him anything...and he says he knows that they probably need to...because he knows that most people, even many family and friends do not want to hear it much less even understand what someone with MS is talking about. He said many doctors do not want to, either. I wonder if he had a loved one with MS?
By the way, what are the neuropsych problems you were referring to? Are they more cognitive, memory, mood type variants or what?
By the way, what are the neuropsych problems you were referring to? Are they more cognitive, memory, mood type variants or what?
Thank you ever so much for telling me your story. I admire you and your husband for your persistence and endurance. I will keep going. I have six children. i will pray for your family...craig
Craig:
My husband was recently diagnosed with Progressive MS(relapsing). It took us seven neuros (technically) and five years. The first neuro said "hmmmmm, maybe you have been wearing your shoes too tight all these years", never showed us the MRI films of Tim's brain that were sittling on my lap-showing 24 lesions. 24! I grabbed Tim's file as Tim sat there writhing in pain and in shock at this quack and said we will not be back. I filed a complaint with the medical board of conduct NYS and never paid his bill. The compaint was dismissed-not enough findings to support a discliplinary action, etc. Bunch of ****! The doctor never sent a seond bill. He new better!
2nd neuro but not thorough enough, fourth would not take the case since he did not have a DX, fifth sent us to someone else---who sent us to someone else-who would not take our insurance, finally number seven gave us the diagnosis of Progressive Relapsing MS-last week. If someone had done and MRI of Tim's brain over the course of five years he would not be declining so rapidly at this point. He is 46 and we have four young children! No quality of life, still working -his choice and still walking-barely most days.
Make an appt. no with another neuro-it often takes weeks or months to get in to the best ones-happened to us. Then take the new results to the new neuro-and push, push, pus. tell your wife-I sadi Good for you-I do the same thing and I have gotten more results for Tim than he would have gotten alone. never accept no for an anwer when you know something is wrong. It is you rlife and your body and it is better to know-believe me.
You are in our thoughts and prayers. Keep fighting and if you want to work-you should. It is sometimes good for the mind and it is defitely good for the finances. My husband said to neuro number seven-I am going to work until i cannot work any longer, I am going to walk until I cannot take another step! Bravery! Strengtht, Faith, Hope, Laughter, Love and Family(these will get you thru it) and ....what can I say, I am married to the most wonderful man in the world-he just happens to have MS.
My husband was recently diagnosed with Progressive MS(relapsing). It took us seven neuros (technically) and five years. The first neuro said "hmmmmm, maybe you have been wearing your shoes too tight all these years", never showed us the MRI films of Tim's brain that were sittling on my lap-showing 24 lesions. 24! I grabbed Tim's file as Tim sat there writhing in pain and in shock at this quack and said we will not be back. I filed a complaint with the medical board of conduct NYS and never paid his bill. The compaint was dismissed-not enough findings to support a discliplinary action, etc. Bunch of ****! The doctor never sent a seond bill. He new better!
2nd neuro but not thorough enough, fourth would not take the case since he did not have a DX, fifth sent us to someone else---who sent us to someone else-who would not take our insurance, finally number seven gave us the diagnosis of Progressive Relapsing MS-last week. If someone had done and MRI of Tim's brain over the course of five years he would not be declining so rapidly at this point. He is 46 and we have four young children! No quality of life, still working -his choice and still walking-barely most days.
Make an appt. no with another neuro-it often takes weeks or months to get in to the best ones-happened to us. Then take the new results to the new neuro-and push, push, pus. tell your wife-I sadi Good for you-I do the same thing and I have gotten more results for Tim than he would have gotten alone. never accept no for an anwer when you know something is wrong. It is you rlife and your body and it is better to know-believe me.
You are in our thoughts and prayers. Keep fighting and if you want to work-you should. It is sometimes good for the mind and it is defitely good for the finances. My husband said to neuro number seven-I am going to work until i cannot work any longer, I am going to walk until I cannot take another step! Bravery! Strengtht, Faith, Hope, Laughter, Love and Family(these will get you thru it) and ....what can I say, I am married to the most wonderful man in the world-he just happens to have MS.
IT TOOK ME 8 NEURO. DRS. IN 4 YRS.
TO DX ME. YOU NEED TO KEEP LOOKING
FOR THE RITE DR. AS FOR ME IF THEY
WOULD HAD SEEN MY FIRST LESION 4 YRS
AGO MAYBE THINGS WOULD BE DIFFERENT FOR ME.
THEY ALSO TOLD ME ATROPHY COMES WITH
AGE. I WAS 45.
GOD BLESS KITT
P.S. IRISH AND SCOTTISH (O'NEILL) LOL
TO DX ME. YOU NEED TO KEEP LOOKING
FOR THE RITE DR. AS FOR ME IF THEY
WOULD HAD SEEN MY FIRST LESION 4 YRS
AGO MAYBE THINGS WOULD BE DIFFERENT FOR ME.
THEY ALSO TOLD ME ATROPHY COMES WITH
AGE. I WAS 45.
GOD BLESS KITT
P.S. IRISH AND SCOTTISH (O'NEILL) LOL
You okay? I'm worried about a developing depression in you. You certainly deserve one - or at least a really good "nervous breakdown."
I've saved some ice cream for you. Quix
I've saved some ice cream for you. Quix
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
Post from Johnny 5th from bottom. Comment about reading that health care professionals more prone to faking symptoms. Sorry for the confusion.
Thank you Heather. What I plan on doing is get those tests and get the results myself and move on. And yes, i think the doctors are waiting for total disability. They are already saying that my current level of leg disability is irreversible. They seem to have no sympathy for it either. I appreciate your kind words and encouragement. I am becoming a very angry and disillusioned person.....Craig
Hi Quix, the neuro was in the movement disorders clinic of the neuro dept. That is where all the new neuro patients are being "dumped" because of not enough general neuro docs and the MS center does not return patient phone calls for appts because they too are overwhelmed. Jefferson is marketing itself as the neuroscience center for Philadelphia and I think they can't handle the number of patients being sent there.
So this guy is a parkinsons doctor and was quite annoyed that we were given an appt with him. he wanted us to file a complaint with the office manager about being given an appt with him. So my bad luck continues.
I cannot remember a time when I had hyper reflexes but a year ago my soles of my feet were very sensitive.
My primary doc will not give me a letter allowing me to go to Seattle because they have the same requirement as OR I am told, with patients coming in from out of state. I think I will have my doctor friend send the letter for me since my primary is adamant that I don't need any more opinions.
I am sending Dr. Morrow a letter of my symptoms (I will use some of your sentences if you don't mind) and a copy of both my brain MRI's. If he agrees to see me, then I will have to get that friend to write another letter..
I have no idea what to do about the hydrocephalus. I asked a friend who works with a radiologist to look at my films. he will do so at his leisure, and could be two weeks from now. I often wonder why none of the other neuros even brought it up. I am afraid I will be chasing a ghost, like I have been chasing a Cushings diagnosis for almost three years.
Thanks so much for your research and time. Do you think I should re-visit normal pressure hydrocephalus??
I love the C.C. idea. That is a" lawyerly" thing to do!!!!........Craig
So this guy is a parkinsons doctor and was quite annoyed that we were given an appt with him. he wanted us to file a complaint with the office manager about being given an appt with him. So my bad luck continues.
I cannot remember a time when I had hyper reflexes but a year ago my soles of my feet were very sensitive.
My primary doc will not give me a letter allowing me to go to Seattle because they have the same requirement as OR I am told, with patients coming in from out of state. I think I will have my doctor friend send the letter for me since my primary is adamant that I don't need any more opinions.
I am sending Dr. Morrow a letter of my symptoms (I will use some of your sentences if you don't mind) and a copy of both my brain MRI's. If he agrees to see me, then I will have to get that friend to write another letter..
I have no idea what to do about the hydrocephalus. I asked a friend who works with a radiologist to look at my films. he will do so at his leisure, and could be two weeks from now. I often wonder why none of the other neuros even brought it up. I am afraid I will be chasing a ghost, like I have been chasing a Cushings diagnosis for almost three years.
Thanks so much for your research and time. Do you think I should re-visit normal pressure hydrocephalus??
I love the C.C. idea. That is a" lawyerly" thing to do!!!!........Craig
I feel your frustration. I too must continue to work but beyond that I am not very physical. I do love what I do and it would devastate me to not be able to work as a nurse anymore. I wonder how the bottom line interferes with diagnosing. Is it that a lot of people would not be able to afford treatment....Just throwing that out there.
Scottish and Irish descent here. Wonder if we ought to take a poll to find out how many of us are of Scottish descent? I also wonder if this is only a conincidence...there are so many variables that researchers are looking at, one can only guess.
Heather Marie McClaren (now with that name you KNOW I have to be Scottish and Irish) Have the red hair to go with it....LOL And should I say temper....nahhhh...not me!
Heather Marie McClaren (now with that name you KNOW I have to be Scottish and Irish) Have the red hair to go with it....LOL And should I say temper....nahhhh...not me!
Very interesting reading also. I just got a copy of it and it is highly informative. I would caution that is not recommended reading for some. The reason I say that is that it states within this manual that neurologist have to consider that someone may not have the symptoms claimed (faking) and one of the signs would be having a greater understanding of a disease than the general population. The last thing you want is to mention this to your neuro that you read such an such in the Multiple Sclerosis Handbook 2007 edition.
Still, it provideds a wealth of information (I've only had it a couple of days) that is valuable if your able to understand the information and somehow translate that into a better evaluation of your condition. That to me would be the difficult part. Its one thing for someone with a background in the medical field to have an above average understanding of medical conditions, it another for the lay person to come across as an expert. What I found interesting in the manual was that people in the health care field are more likely to fake symptoms for a number of reasons than in any other field.
Still, a great read.
Johnny
Still, it provideds a wealth of information (I've only had it a couple of days) that is valuable if your able to understand the information and somehow translate that into a better evaluation of your condition. That to me would be the difficult part. Its one thing for someone with a background in the medical field to have an above average understanding of medical conditions, it another for the lay person to come across as an expert. What I found interesting in the manual was that people in the health care field are more likely to fake symptoms for a number of reasons than in any other field.
Still, a great read.
Johnny
Welcome to the forum! I've not seen you lurking around at all. Is this your first time on? I'm sorry your illness is what brought you here, but you're in good company. Sorry to hear of your abrupt departure from the service, as well. That had to be difficult, having your choices taken away from you like that.
I just wanted to say hello, and I'm glad you have a great doctor that is attentive. I have found a great doc after many not-so-good ones, finally.
You're right that communication is important, for sure. That's why Craig brought his sarcastic wife along!
I hope you stick around and give us a longer version of your story, if you're so inclined. Go to the top and hit the blue "Post a Question" button and tell us about yourself. We'd love to know!
Take care!
Zilla*
I just wanted to say hello, and I'm glad you have a great doctor that is attentive. I have found a great doc after many not-so-good ones, finally.
You're right that communication is important, for sure. That's why Craig brought his sarcastic wife along!
I hope you stick around and give us a longer version of your story, if you're so inclined. Go to the top and hit the blue "Post a Question" button and tell us about yourself. We'd love to know!
Take care!
Zilla*
Welcome,
I guess we can blame it on the scottish heritage.
I'm glad we aren't alone ,you have had the pleasure of neurology quacker also,glad you have a good attentive neuro.
I agree the more questions and asking a DR to speak in english words definately helps.
I guess we can blame it on the scottish heritage.
I'm glad we aren't alone ,you have had the pleasure of neurology quacker also,glad you have a good attentive neuro.
I agree the more questions and asking a DR to speak in english words definately helps.
If I remember correctly, Scotland has the highest MS incident levels in the world. Buffalo, NY once had the highest MS incident level in the country. Now since my family is Scottish and Buffalo is my hometown the only other factor I missed was sex (I'm not female).
I was diagnosed with MS when I was still a Senior Chief Petty Officer in the Navy Reserve. 18 years towards retirement and I was invited to leave as I was no longer medically qualified to serve. Thanks guys, pleasure doing business with you. Since then, I've had the pleasure of working with fine neurologists. One, who looked and acted like a Space Cadet, was quite interested in my condition. He would periodically call to see how I was doing. My current neurologist (I moved to Wisconsin) takes the time with me to review my MRI and physical condition at great length.
My suggestion is to Ask Questions. When in doubt, Ask Questions. Don't let the neurologist try and smother you with medico-speak. Make them use normal people's language and Ask Questions.
I was diagnosed with MS when I was still a Senior Chief Petty Officer in the Navy Reserve. 18 years towards retirement and I was invited to leave as I was no longer medically qualified to serve. Thanks guys, pleasure doing business with you. Since then, I've had the pleasure of working with fine neurologists. One, who looked and acted like a Space Cadet, was quite interested in my condition. He would periodically call to see how I was doing. My current neurologist (I moved to Wisconsin) takes the time with me to review my MRI and physical condition at great length.
My suggestion is to Ask Questions. When in doubt, Ask Questions. Don't let the neurologist try and smother you with medico-speak. Make them use normal people's language and Ask Questions.
Hmmm...I, too, am of scottish descent. Craig, I spent all evening looking for good discussions on reflexes in MS. The vast majority, especially early and with minimal disability, are hyper. But, even my secret source, from which I amaze you all (lol) states, "Most patients have brisk reflexes." The use of the word MOST is important. This book is called the "Multiple Sclerosis Handbook. It is a compilation of all the important research on MS and is updated about every two years. Each chapter is 20 to 30 pages and each chapter has 200 to 400 citations!!! This is "da bomb" in terms of current consensus.
That said, and as Heather testified, I know of many people with MS who have lost some reflexes. The more damage that is done, the more that complex pathway (of the deep tendon reflex) can be broken. You have a great deal of lower extremity disability. Did this guy do a thorough neuro on you or did he stop when the reflexes weren't as expected?
The behavior of this latest neurologist is bizarre! To declare that you present the picture of a patient with MS, then fail to find his brisk reflexes, and then re-interpret the MRI is nuts - NUTS. He is poorly educated on MS and probably just remembers, 5 or 6 things. Then he won't diagnose it if all 6 things aren't perfect. How do you find these guys? Are you some kind of MD "Loser Magnet?"
I have continued reading on age-related brain atrophy, and I still get the strong impression that at age 50 it may be measurable, but nowhere have I seen that it is very often visible and accompanied and never have I read that it would be accompanied by "black holes." One large study even documented that 50% of healthy people in their fifties have no "measurable" atrophy at all. I wonder if these docs are reading this stuff and forgetting that they do incredibly complex computations to measure atrophy in it's early stages. These neuros must think that they can see these early changes.
When is the neuro consultation happening in Seattle? I wonder if you should preface your visit to this guy with, "Look, I am rapidly losing all fuction in my legs, I can't play with my kids, I'm struggling to support my family working 4 hour days. My MRI shows mild atrophy with significant black hole space. The docs have done the MRI's looking for abnormalities and when they find the abnormalities, they write them off. One neuro even said that diminished reflexes absolutely ruled out MS. Can you bleieve that! I know that is not true. Something is taking my life away. Please, try to see that whatever I have, it must be an unusual presentation. Three docs have told me to accept that I am wasting away and stop looking for answers."
Do you remember if in the beginning of your illness if your knee reflexes were brisk? Also, What about the reflexes at the elbow? Typically, when they check these there is a visble movement of the biceps, but it is hyperactive if the forearm raises.
Finally, How willing are you to revisit Normal Pressure Hydrocephalus - not with the NIH (cause they already had the needle and drainage all ready, but maybe with a higly respected neurosurgeon?
Now, I have only contempt for his dissemblings about whether you were disabled and whether it is best to wither away without a diagnosis than to with away with MS and the possiblity of finding a treatment. I would (this is me, not me telling you what to do) write him a letter which restates his bizarre position on searching for a diagnosis, his totally bizarre statements about disability, and correct his misconceptions about MS. I would also CC. this letter to the head of the Neurology department at that university. But, first get his evaluation letter.
I love the power of the CC. Whenever I challenge anyone I also CC the letter to everyone concerned, especially if they are in a position of higher authority. That way it isn't a dirty little secret the doctor will be able to hide. I call this method "Death by CC." And I have won several battel with large corporations using it.
All I can say is I'm glad it's a big country, and there are a lot of neurologists, because you run through them faster than most.
Finally, have you had neuropsych testing? MS has some very characteristic findings from that as Johnny will attest.
Those are my ideas bright and early in the morning.
I still have my fingers crossed for you. Quix
That said, and as Heather testified, I know of many people with MS who have lost some reflexes. The more damage that is done, the more that complex pathway (of the deep tendon reflex) can be broken. You have a great deal of lower extremity disability. Did this guy do a thorough neuro on you or did he stop when the reflexes weren't as expected?
The behavior of this latest neurologist is bizarre! To declare that you present the picture of a patient with MS, then fail to find his brisk reflexes, and then re-interpret the MRI is nuts - NUTS. He is poorly educated on MS and probably just remembers, 5 or 6 things. Then he won't diagnose it if all 6 things aren't perfect. How do you find these guys? Are you some kind of MD "Loser Magnet?"
I have continued reading on age-related brain atrophy, and I still get the strong impression that at age 50 it may be measurable, but nowhere have I seen that it is very often visible and accompanied and never have I read that it would be accompanied by "black holes." One large study even documented that 50% of healthy people in their fifties have no "measurable" atrophy at all. I wonder if these docs are reading this stuff and forgetting that they do incredibly complex computations to measure atrophy in it's early stages. These neuros must think that they can see these early changes.
When is the neuro consultation happening in Seattle? I wonder if you should preface your visit to this guy with, "Look, I am rapidly losing all fuction in my legs, I can't play with my kids, I'm struggling to support my family working 4 hour days. My MRI shows mild atrophy with significant black hole space. The docs have done the MRI's looking for abnormalities and when they find the abnormalities, they write them off. One neuro even said that diminished reflexes absolutely ruled out MS. Can you bleieve that! I know that is not true. Something is taking my life away. Please, try to see that whatever I have, it must be an unusual presentation. Three docs have told me to accept that I am wasting away and stop looking for answers."
Do you remember if in the beginning of your illness if your knee reflexes were brisk? Also, What about the reflexes at the elbow? Typically, when they check these there is a visble movement of the biceps, but it is hyperactive if the forearm raises.
Finally, How willing are you to revisit Normal Pressure Hydrocephalus - not with the NIH (cause they already had the needle and drainage all ready, but maybe with a higly respected neurosurgeon?
Now, I have only contempt for his dissemblings about whether you were disabled and whether it is best to wither away without a diagnosis than to with away with MS and the possiblity of finding a treatment. I would (this is me, not me telling you what to do) write him a letter which restates his bizarre position on searching for a diagnosis, his totally bizarre statements about disability, and correct his misconceptions about MS. I would also CC. this letter to the head of the Neurology department at that university. But, first get his evaluation letter.
I love the power of the CC. Whenever I challenge anyone I also CC the letter to everyone concerned, especially if they are in a position of higher authority. That way it isn't a dirty little secret the doctor will be able to hide. I call this method "Death by CC." And I have won several battel with large corporations using it.
All I can say is I'm glad it's a big country, and there are a lot of neurologists, because you run through them faster than most.
Finally, have you had neuropsych testing? MS has some very characteristic findings from that as Johnny will attest.
Those are my ideas bright and early in the morning.
I still have my fingers crossed for you. Quix
It took Terri Garr 20 years to get a DR just to listen and do the proper testing.Her along with Montel Williams,both celebrities and they were subject to the same neuro nastiness we all have experienced.
I honestly think that the neurologist in todays medical fields need to be reschooled on bedside manners,and MS.I recently watched a show on the today show and they stated that in the next 5-10 years that 1 out of every 100 people will be Dx'd with MS.that it's the most rapid spreading disorder in todays society.
In my little farm community there's 54 women with MS.This is a town of less than 3000 people.They have called it a cluster effect.And the majority of us being recently Dx'd are 40 plus.We get to have our little B**** sessions at our local friday night football games.We have our own support groups.It just happens to be that 3 of my childrens best friends mothers have MS.
This same wide spread effect happened in Scottland a hundred years ago.I blame my MS on my scottish ancestory as we have researched our ancestory tree many of my scottish decendents had died from sclerosis or multiple sclerosis.my grandmother had MS.I vaguely remember her.
You keep fighting for answers.
T
I honestly think that the neurologist in todays medical fields need to be reschooled on bedside manners,and MS.I recently watched a show on the today show and they stated that in the next 5-10 years that 1 out of every 100 people will be Dx'd with MS.that it's the most rapid spreading disorder in todays society.
In my little farm community there's 54 women with MS.This is a town of less than 3000 people.They have called it a cluster effect.And the majority of us being recently Dx'd are 40 plus.We get to have our little B**** sessions at our local friday night football games.We have our own support groups.It just happens to be that 3 of my childrens best friends mothers have MS.
This same wide spread effect happened in Scottland a hundred years ago.I blame my MS on my scottish ancestory as we have researched our ancestory tree many of my scottish decendents had died from sclerosis or multiple sclerosis.my grandmother had MS.I vaguely remember her.
You keep fighting for answers.
T
I have had MS for 12 years...excuse me for repeating myself all the time...but have learned something over the years because of this fact.
The fact that you have an absent relfex or even slowed reflexes DOES NOT mean that you do not have MS. As with me, one leg is hyperreflexic and the other is deader than a door nail. My reactions are extremely slow.. There is so much damage coming through my spinal cord lesion, that the message is not getting through for me to even REACT to the "doctor's little hammer." I'd like to tell him what I'd like to do with his little hammer. Like putting it where the sun doesn't shine....
SO..Craig, "taking away" your diagnosis of MS due to an absent reflex is ABSOLUTE NONSENSE. Especially in the presence of all your other symptoms and positive test results. DO NOT wait. DO NOT "trust him." It's your life...not his! Would he tell his wife, who had the same test results as you, "Honey, trust me, you don't have MS. So I don't think you need to be treated with any MS medicinal therapy's." I think NOT! There is no way he would say that to a member of his family that he loves. No way he would take the risk of NOT treating them, to try and slow the progression of the disease. Don't you agree?
Craig, nobody wishes more than all of us that you DIDN'T have MS, but to this lady, it sounds clear cut. You need to get started on some Interferon therapy or one of the others, to slow the progression. What does this doctor think you are suppose to do, wait until you ARE in a wheelchair before he decides to do something. My gosh, I'm gonna blow....I am PO'ed.
MS is ALWAYS active, whether you "feel" a relapse coming on or not. Always! Always lurking in the background, doing it's damage. The "MS-Pac Man" continues to chew away.... It's too much of a risk in my opinion to wait to see if the doctor 'gives you back a diagnosis of MS.' Especially since he changed his mind only due to an absent or slow reflex.
Of course, waiting for the test results that your doctor just ordered are totally up to you. But didn't he already say that he wouldn't change his mind? If I read your post right, I believe that's what it says....
That doctor needs a swift kick up his aspirin with my bad leg. I certainly won't feel anything.....but I hope like heck he does...
Be strong and keep fighting.... If you want to tell your doctor about what this 'veteran MS'er' told you about absent or slowed reflexes, please do so. I can give him the name of my Neuro if he would like to speak to someone that knows what the heck they are talking about.
Heather
The fact that you have an absent relfex or even slowed reflexes DOES NOT mean that you do not have MS. As with me, one leg is hyperreflexic and the other is deader than a door nail. My reactions are extremely slow.. There is so much damage coming through my spinal cord lesion, that the message is not getting through for me to even REACT to the "doctor's little hammer." I'd like to tell him what I'd like to do with his little hammer. Like putting it where the sun doesn't shine....
SO..Craig, "taking away" your diagnosis of MS due to an absent reflex is ABSOLUTE NONSENSE. Especially in the presence of all your other symptoms and positive test results. DO NOT wait. DO NOT "trust him." It's your life...not his! Would he tell his wife, who had the same test results as you, "Honey, trust me, you don't have MS. So I don't think you need to be treated with any MS medicinal therapy's." I think NOT! There is no way he would say that to a member of his family that he loves. No way he would take the risk of NOT treating them, to try and slow the progression of the disease. Don't you agree?
Craig, nobody wishes more than all of us that you DIDN'T have MS, but to this lady, it sounds clear cut. You need to get started on some Interferon therapy or one of the others, to slow the progression. What does this doctor think you are suppose to do, wait until you ARE in a wheelchair before he decides to do something. My gosh, I'm gonna blow....I am PO'ed.
MS is ALWAYS active, whether you "feel" a relapse coming on or not. Always! Always lurking in the background, doing it's damage. The "MS-Pac Man" continues to chew away.... It's too much of a risk in my opinion to wait to see if the doctor 'gives you back a diagnosis of MS.' Especially since he changed his mind only due to an absent or slow reflex.
Of course, waiting for the test results that your doctor just ordered are totally up to you. But didn't he already say that he wouldn't change his mind? If I read your post right, I believe that's what it says....
That doctor needs a swift kick up his aspirin with my bad leg. I certainly won't feel anything.....but I hope like heck he does...
Be strong and keep fighting.... If you want to tell your doctor about what this 'veteran MS'er' told you about absent or slowed reflexes, please do so. I can give him the name of my Neuro if he would like to speak to someone that knows what the heck they are talking about.
Heather
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