Aa
Worried Well Syndrome.. Anyone???
Have you ever heard of this. Well I just did today. I rec'd my neuro's report today from my GP. This is mainly what neuro # 2 had to say about all of my symptoms. Worried well. He felt that because I was a nurse that I may have been priviledged to more information making me more knowledgeable on causes and symptoms of neurological disorders. Not.
def. Worried Well; found on the net.
The term used for people who seek medical attention in the wake of a biological, chemical, or nuclear attack who are not ill but are concerned... WTF..
I'm somewhat confused.. people that may be worried well, do they generally need Baclofen to help with muscle spasms that I guess aren't really there....? What about leg heaviness/pain, arms don't want to lift up, burning toes, weird shivers when I'm warm all over, tingling or sharp pains on your head, frequent/urgent need to urinate? am I worrying myself to have all these symptoms... Maybe I could worry myself 40pounds lighter next now that would be productive..lol
What do you think of this???
Shelley
def. Worried Well; found on the net.
The term used for people who seek medical attention in the wake of a biological, chemical, or nuclear attack who are not ill but are concerned... WTF..
I'm somewhat confused.. people that may be worried well, do they generally need Baclofen to help with muscle spasms that I guess aren't really there....? What about leg heaviness/pain, arms don't want to lift up, burning toes, weird shivers when I'm warm all over, tingling or sharp pains on your head, frequent/urgent need to urinate? am I worrying myself to have all these symptoms... Maybe I could worry myself 40pounds lighter next now that would be productive..lol
What do you think of this???
Shelley
I wanted to add that fibromyalgia may or may not be able to be diagnosed with just one exam. Sometimes (if they are going by the "pressure point exam" and counting your locations) all the points don't "trigger" on all days. Don't know if this is your issue, but I see that you wrote it had been ruled out. God bless you.
I had and still have many of these symptoms. I went through the same things with my neurologist a year ago. I ended up finding my own problem. It was mold in my house. Toxic mold produces mycotoxins that cause neurologic problems. It is proven! Since I found the mold and moved many of my symptoms are gone. There are many sceptics on this issue, but many experts and victims as well. Don't look past my post! Please consider this! Look up Dr. Ritchie Shoemaker and see his info!
Amy
I am in agreement with Stephanie, this is a very good idea, than when you go see the neuro you are fully armed.. It's a shame you are being put through all this crapola.. if you get my drifft..{{{~!~}}}
"Of course, all people get diagnosed with MS within 6 months....right? " That made me laugh... (as I'm sure you intended to, Quix!)
Thanks everyone, for sharing their thoughts and experiences with this. As someone who's been undx for 7 years (and stopped looking for 5 years) and has had a full neuro-psych exam that ruled me "normal" (whatever that means!), I still worry that it may somehow be somatozation or something.
Having real observations by the neurologist helps remind me that there is something real here. But I have often found myself hesitant to ask for medication, lest I be viewed as "drug seeking" (I was once severely reprimanded by a dr. in college for calling to ask for a refill on my ANTIBIOTIC for a UTI that had not entirely cleared up!) I'm taking gabapentin now for the TN and due to the titrating up nature of getting the dosage right, it's been difficult for me to call/email and say, "This doesn't seem to be working, I'm not getting enough pain relief."
Shelley--hopefully you have a GP who believes in you. It may be worthwhile to have a psychological workup to "rebut" this neuro's assessment. It's nothing to be embarrassed about and will allow you to go into a new neuro's office saying, "This neuro didn't think I had a medical problem, but I've checked out the psychological side and have been told it's not psychological."
Stephanie
Thanks everyone, for sharing their thoughts and experiences with this. As someone who's been undx for 7 years (and stopped looking for 5 years) and has had a full neuro-psych exam that ruled me "normal" (whatever that means!), I still worry that it may somehow be somatozation or something.
Having real observations by the neurologist helps remind me that there is something real here. But I have often found myself hesitant to ask for medication, lest I be viewed as "drug seeking" (I was once severely reprimanded by a dr. in college for calling to ask for a refill on my ANTIBIOTIC for a UTI that had not entirely cleared up!) I'm taking gabapentin now for the TN and due to the titrating up nature of getting the dosage right, it's been difficult for me to call/email and say, "This doesn't seem to be working, I'm not getting enough pain relief."
Shelley--hopefully you have a GP who believes in you. It may be worthwhile to have a psychological workup to "rebut" this neuro's assessment. It's nothing to be embarrassed about and will allow you to go into a new neuro's office saying, "This neuro didn't think I had a medical problem, but I've checked out the psychological side and have been told it's not psychological."
Stephanie
This is such a good conversation we are having on an important subject.. My Daughter really can't help the way her body has been acting when she gets too much stress. I am praying now that she is finally seeing a therapist this issue will be addressed in Depth. I know it is up to how much Lori is willing to work and how much she wants to be healthy.
I am worried about her seeing me now, because I am worse than the last time she saw me, I have to be careful not to give her too much information, it is a very thin line I walk with her.. What the one Doctor explain to me was this wasn't being made up in her head, her brain kind of goes into overload and it manifests these strange symptoms but she adds to the problem when she starts looking things up on line or in all her medical books, she has way too many.
My dear Mom loved having surgeries, because she got the attention of her family, I found it so sad that with some of them it was the only time she heard from them. Her hospital rooms was "PARTY CENTRAL" I am not kidding. I can't tell you how many times they were asked to leave because of the LOUD NOISE. I use to get so mad I never stayed very long, I felt like she needed rest they all took it for me not carrying.... When I am in the hospital, I don't want visitors or phone calls.. JUST LEAVE ME A LONE. !! Mama was just so happy to see her kids and Grandchildren.. They were the same way her last time.. it made me sick..
Anyway, I wish there was some way to get the Doctors to realize that when all your test are showing positive results than the chances of you having MS is pretty large. Why does there have to be a certain number of lesions, and if you show unusual symptoms they want to discount it.. Like they did when I started having the internal spasms and my body would lock in strange positions with in the first two years.. they kept saying it wasn't due to the MS, but could never attach it to any other reason, I ended up thinking I was causing all the awful things that were happening to me and this was after I was DX. I had one Doctor who actually told me,
" You must enjoy being this way otherwise you'd stop it".. That's when I knew he was the SICK ONE not me... You Bet, HE WAS FIRED as soon as I got out of the hospital
So if you don't like how you are being talked to or treated, Than RUN DON"T WALK and find a New Doctor.. Especially if you are having things showing up on your test that are pointing to MS... WE all Need LULU'S Neuro... ! ! ! He sounds so wonderful, so I know there are a few good ones out there.
Sorry to run on so long... Have a love filled day and hang in there, I am Praying all of you will have answers and have them soon.. It is just awful what you are being put through Just AWFUL !!!
{{{{~!~}}}} DJ
I am worried about her seeing me now, because I am worse than the last time she saw me, I have to be careful not to give her too much information, it is a very thin line I walk with her.. What the one Doctor explain to me was this wasn't being made up in her head, her brain kind of goes into overload and it manifests these strange symptoms but she adds to the problem when she starts looking things up on line or in all her medical books, she has way too many.
My dear Mom loved having surgeries, because she got the attention of her family, I found it so sad that with some of them it was the only time she heard from them. Her hospital rooms was "PARTY CENTRAL" I am not kidding. I can't tell you how many times they were asked to leave because of the LOUD NOISE. I use to get so mad I never stayed very long, I felt like she needed rest they all took it for me not carrying.... When I am in the hospital, I don't want visitors or phone calls.. JUST LEAVE ME A LONE. !! Mama was just so happy to see her kids and Grandchildren.. They were the same way her last time.. it made me sick..
Anyway, I wish there was some way to get the Doctors to realize that when all your test are showing positive results than the chances of you having MS is pretty large. Why does there have to be a certain number of lesions, and if you show unusual symptoms they want to discount it.. Like they did when I started having the internal spasms and my body would lock in strange positions with in the first two years.. they kept saying it wasn't due to the MS, but could never attach it to any other reason, I ended up thinking I was causing all the awful things that were happening to me and this was after I was DX. I had one Doctor who actually told me,
" You must enjoy being this way otherwise you'd stop it".. That's when I knew he was the SICK ONE not me... You Bet, HE WAS FIRED as soon as I got out of the hospital
So if you don't like how you are being talked to or treated, Than RUN DON"T WALK and find a New Doctor.. Especially if you are having things showing up on your test that are pointing to MS... WE all Need LULU'S Neuro... ! ! ! He sounds so wonderful, so I know there are a few good ones out there.
Sorry to run on so long... Have a love filled day and hang in there, I am Praying all of you will have answers and have them soon.. It is just awful what you are being put through Just AWFUL !!!
{{{{~!~}}}} DJ
oops! The first link should have been to this thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/Psychic-Groans---Anxiety-or-the-Real-Thing/show/693174
Q
http://www.medhelp.org/posts/Multiple-Sclerosis/Psychic-Groans---Anxiety-or-the-Real-Thing/show/693174
Q
This is an important discussion.
Conversion disorder is actually pretty rare. But, it is real to the patient and should never be dismissed as a nuisance. It requires intensive psychiatric treatment and followup.
In medicine we also use the term "the Walking Worried." In reality, though these terms may have arisen out of the general anxiety and panic of war and terrorism, the term is used in lieu of the term hypochondriac. The more current term is "Health Anxiety". People, almost invariably with an anxiety disorder, mistake normal body sensations for signs of real disease. These people also "symptom surf" online and become convinced that they have dread diseases. They bring their info to their doctors and this breeds the contempt for "all things internet". On some level these people often know that their anxiety is inappropriate, but as with many mood disorders, they cannot overcome it alone. This also takes expert care and sometimes medications to treat.
The third, and largest group are those with Somatization Disorder - people in whom stress is manifested by physical symptoms. In general these are vague symptoms that appear with stress and worry. The vague abdominal discomforts, the muscle pain, headache. In my training we called these "Psychic Groans."
I think that we, with significant and disabling neuro symptoms, are frequently dismissed too early as either stressed out or health neurotics. There have been two "studies" that have looked at what the "real" diagnoses were of people referred to a large MS Clinic. These studies seem to each refer to to the same underlying "data" and statistics to come to the same conclusions.
The main conclusion was this: TWO THIRDS of all the people referred to an MS Clinic have psychiatric diagnoses and the majority of these had Somatization Disorder.. Supposedly this was proven by fulfilling the criteria this condition and by rechecking the patient in 6 months to verify it.
Now, I have read these "studies" and can tell you that they are not "studies" at all. They are articles promoting the agenda that the vast majority of people with neurologic symptoms have no real disease other than psychiatric. They support their "findings" by skewing the description of how MS actually presents and how it should be diagnosed. For example, one of them, published online, states that "only a RARE person with a history of depression will have MS" or that it is rare for a person over 50 to have MS. Other things they state that make it would be rare that a person might have MS is no history of relapses, or an atypical MRI or a negative LP.
WELL NOW.....beings that approximately 20% of the genral population will suffer from depression at some time, can we really just up and dismiss that 20% of people from the risk of MS? Late-onset MS (Onset after age 50) is unusual and may only be 3 to 5% of people with MS. Is 1 in 20 or 1 in 33 really "rare"? Also the article does not distinguish between age at onset of symptoms and age of diagnosis. Can we really rule out MS because no one has diagnosed it until after age 50? How many of us with the diagnosis can look back to an unrecognized beginning of our disease that dates back 10 or 20 years?
No relapses.....Hmmm......Primary Progressive MS makes up 15% of those with this disease. That's about 1 in 7. One in seven = rare? In whose world?
Also, there is the reassurance that they have looked at these people six months later to prove the diagnosis of Somatization Disorder. Now, what did they look for? If the symptoms went away surely it was a psychiatric problem and not possibly something called a "remission." Right? Or maybe, the symptom was still there, but the person had no diagnosis. Of course, all people get diagnosed with MS within 6 months....right?
My point is that these "scientific" articles are out there for our doctors to learn from. They come away thinking that 2/3 of the people they see will be the Walking Worried. I'm not really surprised that they dismiss anything that is not "textbook MS".
I think they then approach all of us with a stance of suspicion and not, as I was taught, to "First believe the patient." This is truly bass-ackwards. It makes us their adversaries from the get-go. Yes, the process of diagnosis is difficult, but can be a great and rewarding challenge. The docs that try to relegate their patients into some supposed pigeon-hole on first visit are being either lazy or stupid, and I think theiy know it. That would be a likely reason for how mean-spirited they are.
This kind of "study" hurts us all. I literally want to wring the necks of the authors for the damage that they are doing. But we have to live with the fact that those opinions are out there and being read by our doctors. The hardest part is that we all know that these people exist - people who live their stress out through symptoms and people who are convinced and terrified they have a dread disease.
So we have to work hard to distinguish ourselves from that group. Recently we bumped up a thread that discusses some of what goes into the diagnosis of Somatization or Health Anxiety. Here it is again for those that missed it.
http://www.medhelp.org/user_journals/show/7625?personal_page_id=302
And here is a followup to that discussion from last spring:
http://www.medhelp.org/posts/Multiple-Sclerosis/Hypo-Gamma-Chondria/show/958389
If any of you want to read the most aggregious of these articles say so and I will find it.
Quix
Conversion disorder is actually pretty rare. But, it is real to the patient and should never be dismissed as a nuisance. It requires intensive psychiatric treatment and followup.
In medicine we also use the term "the Walking Worried." In reality, though these terms may have arisen out of the general anxiety and panic of war and terrorism, the term is used in lieu of the term hypochondriac. The more current term is "Health Anxiety". People, almost invariably with an anxiety disorder, mistake normal body sensations for signs of real disease. These people also "symptom surf" online and become convinced that they have dread diseases. They bring their info to their doctors and this breeds the contempt for "all things internet". On some level these people often know that their anxiety is inappropriate, but as with many mood disorders, they cannot overcome it alone. This also takes expert care and sometimes medications to treat.
The third, and largest group are those with Somatization Disorder - people in whom stress is manifested by physical symptoms. In general these are vague symptoms that appear with stress and worry. The vague abdominal discomforts, the muscle pain, headache. In my training we called these "Psychic Groans."
I think that we, with significant and disabling neuro symptoms, are frequently dismissed too early as either stressed out or health neurotics. There have been two "studies" that have looked at what the "real" diagnoses were of people referred to a large MS Clinic. These studies seem to each refer to to the same underlying "data" and statistics to come to the same conclusions.
The main conclusion was this: TWO THIRDS of all the people referred to an MS Clinic have psychiatric diagnoses and the majority of these had Somatization Disorder.. Supposedly this was proven by fulfilling the criteria this condition and by rechecking the patient in 6 months to verify it.
Now, I have read these "studies" and can tell you that they are not "studies" at all. They are articles promoting the agenda that the vast majority of people with neurologic symptoms have no real disease other than psychiatric. They support their "findings" by skewing the description of how MS actually presents and how it should be diagnosed. For example, one of them, published online, states that "only a RARE person with a history of depression will have MS" or that it is rare for a person over 50 to have MS. Other things they state that make it would be rare that a person might have MS is no history of relapses, or an atypical MRI or a negative LP.
WELL NOW.....beings that approximately 20% of the genral population will suffer from depression at some time, can we really just up and dismiss that 20% of people from the risk of MS? Late-onset MS (Onset after age 50) is unusual and may only be 3 to 5% of people with MS. Is 1 in 20 or 1 in 33 really "rare"? Also the article does not distinguish between age at onset of symptoms and age of diagnosis. Can we really rule out MS because no one has diagnosed it until after age 50? How many of us with the diagnosis can look back to an unrecognized beginning of our disease that dates back 10 or 20 years?
No relapses.....Hmmm......Primary Progressive MS makes up 15% of those with this disease. That's about 1 in 7. One in seven = rare? In whose world?
Also, there is the reassurance that they have looked at these people six months later to prove the diagnosis of Somatization Disorder. Now, what did they look for? If the symptoms went away surely it was a psychiatric problem and not possibly something called a "remission." Right? Or maybe, the symptom was still there, but the person had no diagnosis. Of course, all people get diagnosed with MS within 6 months....right?
My point is that these "scientific" articles are out there for our doctors to learn from. They come away thinking that 2/3 of the people they see will be the Walking Worried. I'm not really surprised that they dismiss anything that is not "textbook MS".
I think they then approach all of us with a stance of suspicion and not, as I was taught, to "First believe the patient." This is truly bass-ackwards. It makes us their adversaries from the get-go. Yes, the process of diagnosis is difficult, but can be a great and rewarding challenge. The docs that try to relegate their patients into some supposed pigeon-hole on first visit are being either lazy or stupid, and I think theiy know it. That would be a likely reason for how mean-spirited they are.
This kind of "study" hurts us all. I literally want to wring the necks of the authors for the damage that they are doing. But we have to live with the fact that those opinions are out there and being read by our doctors. The hardest part is that we all know that these people exist - people who live their stress out through symptoms and people who are convinced and terrified they have a dread disease.
So we have to work hard to distinguish ourselves from that group. Recently we bumped up a thread that discusses some of what goes into the diagnosis of Somatization or Health Anxiety. Here it is again for those that missed it.
http://www.medhelp.org/user_journals/show/7625?personal_page_id=302
And here is a followup to that discussion from last spring:
http://www.medhelp.org/posts/Multiple-Sclerosis/Hypo-Gamma-Chondria/show/958389
If any of you want to read the most aggregious of these articles say so and I will find it.
Quix
COMMUNITY LEADER
I've just been having a very interesting conversation with my mother about conversion disorders in general, one of the things that springs to mind is that even if someone does genually have a conversion disorder and all tests point to this conclusion, not the quick off the mark assumption dx.
Then why are people with this true disorder being dismissed and humiliated like they are a waste of a doctors time? One of the very components of conversion disorder is that the subject doesnt know, they are not purposly making them selves sick for attention like munchousen (sp?) their symptoms are very real, as real as stigmatas. It is scientifically proven to be neuro-psychologically based phononima and not in that persons control but it appears that many in the medical profession are treating these 'in need of help' patients badly.
If my problems where proven to be psychologically based then quite frankly it would be some what of a relief, it wouldn't be dx out of my control, there is help and in my opinion an easier fix than a dx of MS. I think there should be a better way for neurologist and other specialist to broach the subject of conversion disorders, one that doesnt make the patient feel worse for the way its being conveyed, ie dismissively. So if a dr said to me....
'We've run every test to explain why xyz is happening and so far we have not been able to find the cause but because there is obviously a problem and we are not able at this time to help as much as i'd like. I think it might be a good idea to see if there could be a psychological component to this, i'm not saying there is just that it would be worth getting tested by a trained specialist in that field so we know which direction we should be looking at next.'
I think more people would be helped in the long run, those with a real conversion disorder and those with a none emotional physical disease that needs neurological assistance. Its not necessarily a bad thing to have a psychological condition but so many people dont see it that way, sort of taboo when it should be looked at as the same as a broken bone, treatable!
I just want the name, treatment etc so i can move forward, I may be odd to not really care so much about what it is and more of ok now what do we do to change the future.
Cheers...........JJ
Then why are people with this true disorder being dismissed and humiliated like they are a waste of a doctors time? One of the very components of conversion disorder is that the subject doesnt know, they are not purposly making them selves sick for attention like munchousen (sp?) their symptoms are very real, as real as stigmatas. It is scientifically proven to be neuro-psychologically based phononima and not in that persons control but it appears that many in the medical profession are treating these 'in need of help' patients badly.
If my problems where proven to be psychologically based then quite frankly it would be some what of a relief, it wouldn't be dx out of my control, there is help and in my opinion an easier fix than a dx of MS. I think there should be a better way for neurologist and other specialist to broach the subject of conversion disorders, one that doesnt make the patient feel worse for the way its being conveyed, ie dismissively. So if a dr said to me....
'We've run every test to explain why xyz is happening and so far we have not been able to find the cause but because there is obviously a problem and we are not able at this time to help as much as i'd like. I think it might be a good idea to see if there could be a psychological component to this, i'm not saying there is just that it would be worth getting tested by a trained specialist in that field so we know which direction we should be looking at next.'
I think more people would be helped in the long run, those with a real conversion disorder and those with a none emotional physical disease that needs neurological assistance. Its not necessarily a bad thing to have a psychological condition but so many people dont see it that way, sort of taboo when it should be looked at as the same as a broken bone, treatable!
I just want the name, treatment etc so i can move forward, I may be odd to not really care so much about what it is and more of ok now what do we do to change the future.
Cheers...........JJ
You guys are great... thanks for your informative posts. DJ thanks for sharing with us your struggles with your daughter. I'm glad she is going to get some help, hopefully this will get her on the right track to get her on a better path in life.
My mother was always an ill person growing up, she's still the same to this day. It's not nice to say but I've come to the conclusion that she must need the attention from others. This used to really irritate me when I was younger. I thought my god she's beautiful, has a great life but she always needs to be sick for some reason. I no longer get irritated or angry with her for this, she will not change. That is partly why I hate that I'm not well. I try to tell her sometimes that I wish she could feel my pain. I'm not one to complain I think that I am a very strong and stable person. I always told myself I would never put my family through what my mom did to all of us growing up. I try to keep alot of my pain to myself. It's been hard to do, so at times I do share some of the waky symptoms with my husband. That is why I"m so greatful for this forum when I can really let everything out without ever being judged.
Regarding our doctors;
I often think about how hard it must truly be for dr's. It's not a job I would want to do. For every sincere case their must be quite a few of "worried well" cases. I am honest with myself and stay open to anything. This may sound strange but I am hoping that my next MRI will show more spots then the last, I'm praying for answers and treatment soon. Life is so short and the sooner I have answers then I can move on. On to the next chapter of life called living...... :)
Yes all the mimics so far have been ruled out on three seperate occasions. Lupus, Lymes, B12, Fibro I can't remember what else, oh my rheumatoid factor is normal.
Take care,
Shelley
My mother was always an ill person growing up, she's still the same to this day. It's not nice to say but I've come to the conclusion that she must need the attention from others. This used to really irritate me when I was younger. I thought my god she's beautiful, has a great life but she always needs to be sick for some reason. I no longer get irritated or angry with her for this, she will not change. That is partly why I hate that I'm not well. I try to tell her sometimes that I wish she could feel my pain. I'm not one to complain I think that I am a very strong and stable person. I always told myself I would never put my family through what my mom did to all of us growing up. I try to keep alot of my pain to myself. It's been hard to do, so at times I do share some of the waky symptoms with my husband. That is why I"m so greatful for this forum when I can really let everything out without ever being judged.
Regarding our doctors;
I often think about how hard it must truly be for dr's. It's not a job I would want to do. For every sincere case their must be quite a few of "worried well" cases. I am honest with myself and stay open to anything. This may sound strange but I am hoping that my next MRI will show more spots then the last, I'm praying for answers and treatment soon. Life is so short and the sooner I have answers then I can move on. On to the next chapter of life called living...... :)
Yes all the mimics so far have been ruled out on three seperate occasions. Lupus, Lymes, B12, Fibro I can't remember what else, oh my rheumatoid factor is normal.
Take care,
Shelley
I can relate 2 this- u- know what your body is telling you- this is crasy!! worried well- what will they up with next!! they want 2 wait till you show signs of disability- and they dont want 2 commit themselves-maybe 2 many law suites!! hang n there tick
OK Sweetie,
I am going to weigh in on the other side of this topic. My Oldest Daughter, came to visit me in 1999. Until that time she went to several different doctors, for aches and pains, these happened when she was under some stress. They weren't sever, just bothersome. After her visit she wasn't home a month and she started talking about spasms, and bladder problems, the rounds of testing started, I discovered she was using the computer at the library looking up symptoms, I told her I was told I had dystonic spasticy due to the MS. She totally misunderstood me and came up with the idea she has Genetic Dystonia?? which isn't in our family history.
She went to the large hospital in NYC, to Maryland, and just recently to Cleveland Clinic. All MRI's too many to count, CT Scans, LP's EMG's ETC,, totally Normal.. She has been in and out of the hospitals addicted to many dangerous drugs for at least 4-5 years before she finally couldn't find a new doctor to just write out the scripts on her word alone. This was many of years of hell for me and her, even if she didn't think so...
Her problem was she didn't know how spasms and spasticy actually looked, but she fooled herself and many doctors until they saw the test results. I called her on this three years ago, she wouldn't speak to me for a few months, but after she couldn't get any more of the Strong drugs, she weened her self off of them with the help of a new Doctor.
Now because of all the stress she has had over the past year it has started up again. Some of the old doctors, that would talk to me, said this was her way of dealing with stress. She really believes she has MS or Dystonia, which every test known to mankind have ruled out. She has suffered with anorexia since JR High. This will cause muscle spasms and all kinds of health problems.. But she wouldn't discuss this with me, until I forced her to.. I can put my foot down Hard, if I think one of my kids is heading for trouble.
Thank God she has finally agreed to go into counseling, which I have been urging her to do for years. I finally told her I wasn't going to allow her to come out this Dec, if she didn't find some one who dealt with eating disorders to work with. So she is finally going. I am so Grateful.. There is still room for a lot of hope with her case.
I hope my sharing this with our group hasn't upset anyone, nor do I think that is what is happening to any of you, I am just giving another point of view about where these doctors might be coming from. I think it is so unfair to label a whole group just because they work in the medical profession.. This could and has been said about Doctor for years...
We each have to keep an open mind, I wish they would not be working so close with the Insurance Companies, but that's a whole new topic..LOL Because they are, it has made MS almost impossible to DX, only a few (un) lucky one score a DX these days.. something has to change.. I am talking about the ones who's test all show signs of MS, but they are still being turned away... It is so unfair....
I keep every single one of you in my daily prayers, asking that you each receive answers and get treatment that you need...
Love & Hugs to all of you {{{{{~!~}}}}}
I am going to weigh in on the other side of this topic. My Oldest Daughter, came to visit me in 1999. Until that time she went to several different doctors, for aches and pains, these happened when she was under some stress. They weren't sever, just bothersome. After her visit she wasn't home a month and she started talking about spasms, and bladder problems, the rounds of testing started, I discovered she was using the computer at the library looking up symptoms, I told her I was told I had dystonic spasticy due to the MS. She totally misunderstood me and came up with the idea she has Genetic Dystonia?? which isn't in our family history.
She went to the large hospital in NYC, to Maryland, and just recently to Cleveland Clinic. All MRI's too many to count, CT Scans, LP's EMG's ETC,, totally Normal.. She has been in and out of the hospitals addicted to many dangerous drugs for at least 4-5 years before she finally couldn't find a new doctor to just write out the scripts on her word alone. This was many of years of hell for me and her, even if she didn't think so...
Her problem was she didn't know how spasms and spasticy actually looked, but she fooled herself and many doctors until they saw the test results. I called her on this three years ago, she wouldn't speak to me for a few months, but after she couldn't get any more of the Strong drugs, she weened her self off of them with the help of a new Doctor.
Now because of all the stress she has had over the past year it has started up again. Some of the old doctors, that would talk to me, said this was her way of dealing with stress. She really believes she has MS or Dystonia, which every test known to mankind have ruled out. She has suffered with anorexia since JR High. This will cause muscle spasms and all kinds of health problems.. But she wouldn't discuss this with me, until I forced her to.. I can put my foot down Hard, if I think one of my kids is heading for trouble.
Thank God she has finally agreed to go into counseling, which I have been urging her to do for years. I finally told her I wasn't going to allow her to come out this Dec, if she didn't find some one who dealt with eating disorders to work with. So she is finally going. I am so Grateful.. There is still room for a lot of hope with her case.
I hope my sharing this with our group hasn't upset anyone, nor do I think that is what is happening to any of you, I am just giving another point of view about where these doctors might be coming from. I think it is so unfair to label a whole group just because they work in the medical profession.. This could and has been said about Doctor for years...
We each have to keep an open mind, I wish they would not be working so close with the Insurance Companies, but that's a whole new topic..LOL Because they are, it has made MS almost impossible to DX, only a few (un) lucky one score a DX these days.. something has to change.. I am talking about the ones who's test all show signs of MS, but they are still being turned away... It is so unfair....
I keep every single one of you in my daily prayers, asking that you each receive answers and get treatment that you need...
Love & Hugs to all of you {{{{{~!~}}}}}
Sounds like the neurologist is trying to "practice" outside of his speciality. Maybe we should send him to do an internship in psychiatry so he does learn what conversion disorders really look like!!
When are "those" neurologists ever going to learn to actually help people. It seems to me they are in need of continuing education.
Unfortunately, not only do nurses "eat there young" doctors value your opinion only when in benefits them in some way.
Hang in there and best wishes,
Karen
ps. after reading this, I realize how negative it sounds. I was being more sarcasitc in my head! And by all means, this does not say all docs are like this. We have just run into a lot of difficult ones here.
When are "those" neurologists ever going to learn to actually help people. It seems to me they are in need of continuing education.
Unfortunately, not only do nurses "eat there young" doctors value your opinion only when in benefits them in some way.
Hang in there and best wishes,
Karen
ps. after reading this, I realize how negative it sounds. I was being more sarcasitc in my head! And by all means, this does not say all docs are like this. We have just run into a lot of difficult ones here.
It disturbs me to read a post like yours. This doctor does not know you. How, in good conscience, do they make such a diagnosis without knowing you very, very well? I am glad you will have a psych eval to get that notion out of the way.
Don't feel all alone. When I awoke with severe double vision and numbness, my ignorant D.O. doctor told me the numbness was caused by anxiety. Then she gave me Flonase....Uh, thanks - NOT! Then she unceremoniously dumped me.
Remember that even Quix was thought to be a "malingerer."
Have you had a thorough work up to rule out other disorders? Have you read the Health Pages, upper right hand corner/yellow icon concerning MS mimics?
Good luck to you.
Don't feel all alone. When I awoke with severe double vision and numbness, my ignorant D.O. doctor told me the numbness was caused by anxiety. Then she gave me Flonase....Uh, thanks - NOT! Then she unceremoniously dumped me.
Remember that even Quix was thought to be a "malingerer."
Have you had a thorough work up to rule out other disorders? Have you read the Health Pages, upper right hand corner/yellow icon concerning MS mimics?
Good luck to you.
Thanks for your engaging posts... I really needed to read these tonight.
So far from what I was told all of my neuro exams have been normal. My GP is sending me to another neuro seeing that neuro #2 wasn't too helpful at solving this mystery. Also in his report stated that my numbness can occur during episodes of hyperventalating. My husband and I looked at each other and I told the neurologist that this does not apply to me, I cannot' recall ever being short of breath. His report also said that my main issue was fatigue and that's where the worry well dx came in. I can remember telling him about 7 major symptoms that were pretty concerning to me and my husband.
Oh well, it was definitly a learning experience meeting that wack job.. My psychological testing is coming up soon as well and I can't wait to have it done.
Thanks again you guys!!
Shelley :-))
So far from what I was told all of my neuro exams have been normal. My GP is sending me to another neuro seeing that neuro #2 wasn't too helpful at solving this mystery. Also in his report stated that my numbness can occur during episodes of hyperventalating. My husband and I looked at each other and I told the neurologist that this does not apply to me, I cannot' recall ever being short of breath. His report also said that my main issue was fatigue and that's where the worry well dx came in. I can remember telling him about 7 major symptoms that were pretty concerning to me and my husband.
Oh well, it was definitly a learning experience meeting that wack job.. My psychological testing is coming up soon as well and I can't wait to have it done.
Thanks again you guys!!
Shelley :-))
COMMUNITY LEADER
OK take a deep breath and worry your self 'normal' we know you can do it because this neurologist has concluded your problem is conversion disorder otherwise known as Worry well syndrome! Stats say that less than 1% of the population actually do have this disorder but but but but but 10 to 15% of patients with MS ect are MISDIAGNOSED with conversion disorder because of dr bias!!!
I've located this (have to type cant cut and paste) Introduction to clinical psychiatry, chapter 9, page 115 (Conversion disorder = symptoms suggesting a neurological disorder).
"10 -15% of patients diagnosed with a conversion disorder, a physical disease process will ultimately be diagnosed. eg symptoms of connective tissue disorders such as MS, SLE often occur at different times and in different locations in the body. Such disorders are often initially misdiagnosed as psychological problems. Bias within the medical system and of the part of some medical practitioners, against women, economically disadvantaged, or ethically diverse patients may contribute to inadequate workups and the premature diagnosis of conversion disorder in the presense of actual disease."
The other thing that can create this problem is dr shopping, and thats what seeing multiple neurologists in the long road to finding answers, (common for MSers) apears to some drs and points them towards this dx and it seems a common problem getting to the bottom of 'real' diseases that are often hard to diagnose. I think Quix made some valid comments about this in the myths or lies my dr told me thread (sorry cant remember its exact name) and it is rare, might be worth reading.
So where do you go from here? I know they are incorrectly assuming i'm stressed lol and I did go and get a psych assessment done just for my own piece of mind and to shut that idea down before it took flight. I even had a neuro-psychologist assessment done, arranged by the neurologist who had dismissed everything once my MRI didn't support my clinical symptoms of lesions, which is another story in itself but end result from what i can gather is that "stress related illness is unlikely causation and further investication is indicated." When a neuro says its psychological and the psychologists are saying its neurological, in my opinion the ball is handed back to the neurologist to find the cause and psychological is well and truely off the table and no longer going to circle like an unwelcome vulture over your head.
I was peeeeeeeeeed at the sugestion it was all in my head (no pun intended) but just so you are informed, displays of anger at the suggestion of a psychological condition is also expected when they suspect conversion disorder, helps to confirm the opinion the dr is correct. Makes you wonder doesn't it, who wouldn't be peed but apparently the majority of people who do suffer from conversion disorder are completely unaware they are manifesting symptoms, to the patient they are real dispite numerous tests that are normal and dispute this. oh brother its a fishbowl lol!!!
So take a deep breath and PROVE THEM WRONG!!
Cheers........JJ
I've located this (have to type cant cut and paste) Introduction to clinical psychiatry, chapter 9, page 115 (Conversion disorder = symptoms suggesting a neurological disorder).
"10 -15% of patients diagnosed with a conversion disorder, a physical disease process will ultimately be diagnosed. eg symptoms of connective tissue disorders such as MS, SLE often occur at different times and in different locations in the body. Such disorders are often initially misdiagnosed as psychological problems. Bias within the medical system and of the part of some medical practitioners, against women, economically disadvantaged, or ethically diverse patients may contribute to inadequate workups and the premature diagnosis of conversion disorder in the presense of actual disease."
The other thing that can create this problem is dr shopping, and thats what seeing multiple neurologists in the long road to finding answers, (common for MSers) apears to some drs and points them towards this dx and it seems a common problem getting to the bottom of 'real' diseases that are often hard to diagnose. I think Quix made some valid comments about this in the myths or lies my dr told me thread (sorry cant remember its exact name) and it is rare, might be worth reading.
So where do you go from here? I know they are incorrectly assuming i'm stressed lol and I did go and get a psych assessment done just for my own piece of mind and to shut that idea down before it took flight. I even had a neuro-psychologist assessment done, arranged by the neurologist who had dismissed everything once my MRI didn't support my clinical symptoms of lesions, which is another story in itself but end result from what i can gather is that "stress related illness is unlikely causation and further investication is indicated." When a neuro says its psychological and the psychologists are saying its neurological, in my opinion the ball is handed back to the neurologist to find the cause and psychological is well and truely off the table and no longer going to circle like an unwelcome vulture over your head.
I was peeeeeeeeeed at the sugestion it was all in my head (no pun intended) but just so you are informed, displays of anger at the suggestion of a psychological condition is also expected when they suspect conversion disorder, helps to confirm the opinion the dr is correct. Makes you wonder doesn't it, who wouldn't be peed but apparently the majority of people who do suffer from conversion disorder are completely unaware they are manifesting symptoms, to the patient they are real dispite numerous tests that are normal and dispute this. oh brother its a fishbowl lol!!!
So take a deep breath and PROVE THEM WRONG!!
Cheers........JJ
What they said. Sure, people in medical training latch onto things and worry once they've learned about them. But...that doesn't last, and it doesn't show up as objective findings on a neuro exam. What does your neuro exam show?
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Shelly,
Ren has identified a key issue here - it is IMPOSSIBLE to fake a neuro exam done by a skilled neurologist. There are too many ways they can trip you up if they think that your symptoms are not real.
Run, don't walk - to find another neurologist. It might take you several to find the right one but you can do it.
With the ease of access to medical infromation on the web, doctors are going to have to get over this idea that patients worry well into a diagnosis by researching themselves into a disease.
be well,
Lulu
Ren has identified a key issue here - it is IMPOSSIBLE to fake a neuro exam done by a skilled neurologist. There are too many ways they can trip you up if they think that your symptoms are not real.
Run, don't walk - to find another neurologist. It might take you several to find the right one but you can do it.
With the ease of access to medical infromation on the web, doctors are going to have to get over this idea that patients worry well into a diagnosis by researching themselves into a disease.
be well,
Lulu
I have been looked at through the same set of judgmental eyes. I am a nurse and a paralegal. Talk about people walking around on eggshells!
I have been out right asked/told , "but you already knew that didn't you". Wrong. In fact, until I had a diagnosis I deliberately stayed away from googling myself into illness.
A truly confident doc will be able to see around any faking or malingering. It took a while but I was fortunate to find one that was confident and not afraid of my occupation.
If your neuro isn't going to be open-minded and there is a lack of trust in what symptoms your report, I personally would seek out another neuro. Your symptoms are there and they are real.
Ren
I have been out right asked/told , "but you already knew that didn't you". Wrong. In fact, until I had a diagnosis I deliberately stayed away from googling myself into illness.
A truly confident doc will be able to see around any faking or malingering. It took a while but I was fortunate to find one that was confident and not afraid of my occupation.
If your neuro isn't going to be open-minded and there is a lack of trust in what symptoms your report, I personally would seek out another neuro. Your symptoms are there and they are real.
Ren
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