Aa
asking questions over the internet
to all of you who ask these questions.....
why can't you demand answers from the doctors you see?
it is very sad that so many people don't have the nerve to ask their own doctor questions? it certainly does reflect the degree of arrogance and ignorance within the medical field today. american doctors have spent years developing their godlike persona and their ability to intimidate their patients!
remember patients-- you are paying them!! they are not paying you! they are employed by you when you see them!! stop acting like these doctors are doing you a favor! stop accepting only 5-10 minutes from them. get all your questions answered! if not, refuse to pay them!! why waste your time and money on them when they won't even take the time to explain things to you and to answer your questions! God, some of you who post could have a very serious condition and you let the doctor ignore you!
I guess you must beleive that he is more important than you!
and that his time is more valuable than yours! I think not!!!!!
Stand firm and be assertive-you have rights!!!
why can't you demand answers from the doctors you see?
it is very sad that so many people don't have the nerve to ask their own doctor questions? it certainly does reflect the degree of arrogance and ignorance within the medical field today. american doctors have spent years developing their godlike persona and their ability to intimidate their patients!
remember patients-- you are paying them!! they are not paying you! they are employed by you when you see them!! stop acting like these doctors are doing you a favor! stop accepting only 5-10 minutes from them. get all your questions answered! if not, refuse to pay them!! why waste your time and money on them when they won't even take the time to explain things to you and to answer your questions! God, some of you who post could have a very serious condition and you let the doctor ignore you!
I guess you must beleive that he is more important than you!
and that his time is more valuable than yours! I think not!!!!!
Stand firm and be assertive-you have rights!!!
You are a kind and caring soul. You have helped so many people here despite your own illness. I cannot relate to the fatigue as I don't have it. It must be awful.
Patsy
Patsy
its so encouraging to see a post like that. its so important to know about the Drs that have looked at and used this information to improve their knowledge. now that is what i call commited and should be applauded. it is Dr's like that who help all of us who have had difficult experiences remember that they are not all the same. a huge thank you to those Dr's.
annie thank you for your support. it helps so much and those words of encouragement help with the perserverance. i'm sure you understand so well the courange required to continue and stay stable during this time. i do believe that eventually a pathological test result will show something. i don't believe i can feel this unwell and have so many sypmtoms that nothing will show. unfortunately i'm in the uk and our health system is free ( a good thing sometimes), it is also in a lot of debt and currently very badly managed. so resources are low, waiting lists are long. they are excellent in emergency and life threatening situations but unfortunately chronically ill, who are standing, are put to the back of the line. i can afford a little privately but only a little.
i have read some of your posts and sympathise with what you have been though. but you are turning your negative experiences into positives by helping with your words of wisdom. you must be courageous and i will think of that when i get upset by the situation. thank you it helps so much.
i have read some of your posts and sympathise with what you have been though. but you are turning your negative experiences into positives by helping with your words of wisdom. you must be courageous and i will think of that when i get upset by the situation. thank you it helps so much.
Your votes of confidence are inspiring. Thank you.
LOL.. an icon of mordern pop culture - Fox Mulder "The X Files" poster on the wall in the background reads: "The Truth is Out There". Another similar poster reads: "We're Not Alone"
There is a posteur (to distinguish from a poster on the wall) over on the MS Forum, T-Lynn, who was diagnosed conclusively by a neuro at the Cleveland Clinic without MRI lesions with MS. However, her MRI showed global atrophy which is a sign in advanced disease. There has been such a heavy burdern of disease that the brain has actually lost volume. But, all along her MRI's had been normal. That is amazing when you consider that she had so many lesions as to cause shrinking of the brain. The diagnosis was made in reverse, by ruling out all other causes including CIDP. I think she had "some" abnormalities on LP, plus abnormal evoked potentials. Note, with the newest genneration of more sensitive MRI, her lesions have begun to appear. That's why such heavy dependence on the number of MRI lesions is faulty and why neuros need to be far more creative in their conceptualization of disease.
Annie - Have do you also have evidence both upper neuron disease along with he peripheral neuropathy (the autonomic neuropathy)?. You said the doctor was ignoring your other symptoms that didn't fit in the dysautonomia niche. Absolutely, YES, autonomic neuropathy can be seen in MS.
I think CIDP and it's variants are going to be the answer for a lot of people here that have really diffuse, bizarre symptoms and little showing up on traditional tests. It mimics both ALS (sometimes closely) and MS. I'm reading as much on it as I can.
This is clearly going to have to be a short day on the computer. If i don't get to paying my bills, I won't have a connection....
My vertigo began with a botched epidural (X3) anesthesia that had to be turned into a spinal block (was given too much), developed inner ear disease - vertigo - and post op had a fall with a concussion and severe BPPV. They were just beginning to ignore Dr. Epley's cure for BBPV at that time so I went untreated. It was no biggie, I built three medical practices over the next 16 years and had to curtail some activities. Could no longer enjoy whirling rides, or watch fasting moving things, or swim (the bobbing in the horizontal position). But I really didn't have time for much other than medicine anyway.
In 1999 had a severe inner ear infection. Two years in and out of practice. Dr. Epley diagnosed 3 different problems with the vestibular portion of the inner ear, cured the BPPV, surgically closed a traumatic hole - perilymph fistula, and diagnosed chronic, hyperactive labyrinthinitis.
There is no way now to tell if any of my vertigo is coming from a central lesion (ie. MS) It's quite possible, but my vertigo is adequately explained by peripheral disease. About 4 years ago all my ear symptoms switched sides from the L to the R. At this time Dr. Epley diagnosed Autoimmune Inner Ear Disease. So it was no surprise to him when my recent problems were dx'd as MS.
It is interesting that when I started Provigil for the severe fatigue - a miracle drug FDA-approved to treat the fatigue of certain kinds of sleep apnea, narcolepsy and shift-work fatigue. It is a brain stimulant not in the amphetamine category. I was able to move beyond the fatigue and actually accomplish some things, like doing laundry, or running an errand (though riding in the car stimulates the vertigo very badly. I'm mostly homebound.) It is used routinely off-label for the fatigue of MS. It stabilizes the vertigo nicely and I promptly was able to lower my Vicodin use. (One reason I'm not terribly worried about addiction) In reading the MS forums/chat rooms, it is clearly the favored fatigue drug. The major problem with it is that it becomes easy to overdo, both mentally and physically. If you do overdo the crash can be horrendous and long. I am trying to learn to stop early, because I don't see the signs of fatigue.
I can tell you though, just being able to DO SOMETHING (like participate here) is so beguiling, I usually don't stop soon enough. Today the screen is jittering back and forth and, my failed resolve from yesterday to give the forum a pass for the day will have to happen today.
I am going to ask my new neuro if he thinks any of the meds used for neuropathy (like Lyrica or Topomax) might help the most disabling symptom of the eye movements stimulating the dizziness. If nothing works and the hydrocodone is taken away, I would be completely incapacitiated.
I'll see you all tomorrow. Quix
LOL.. an icon of mordern pop culture - Fox Mulder "The X Files" poster on the wall in the background reads: "The Truth is Out There". Another similar poster reads: "We're Not Alone"
There is a posteur (to distinguish from a poster on the wall) over on the MS Forum, T-Lynn, who was diagnosed conclusively by a neuro at the Cleveland Clinic without MRI lesions with MS. However, her MRI showed global atrophy which is a sign in advanced disease. There has been such a heavy burdern of disease that the brain has actually lost volume. But, all along her MRI's had been normal. That is amazing when you consider that she had so many lesions as to cause shrinking of the brain. The diagnosis was made in reverse, by ruling out all other causes including CIDP. I think she had "some" abnormalities on LP, plus abnormal evoked potentials. Note, with the newest genneration of more sensitive MRI, her lesions have begun to appear. That's why such heavy dependence on the number of MRI lesions is faulty and why neuros need to be far more creative in their conceptualization of disease.
Annie - Have do you also have evidence both upper neuron disease along with he peripheral neuropathy (the autonomic neuropathy)?. You said the doctor was ignoring your other symptoms that didn't fit in the dysautonomia niche. Absolutely, YES, autonomic neuropathy can be seen in MS.
I think CIDP and it's variants are going to be the answer for a lot of people here that have really diffuse, bizarre symptoms and little showing up on traditional tests. It mimics both ALS (sometimes closely) and MS. I'm reading as much on it as I can.
This is clearly going to have to be a short day on the computer. If i don't get to paying my bills, I won't have a connection....
My vertigo began with a botched epidural (X3) anesthesia that had to be turned into a spinal block (was given too much), developed inner ear disease - vertigo - and post op had a fall with a concussion and severe BPPV. They were just beginning to ignore Dr. Epley's cure for BBPV at that time so I went untreated. It was no biggie, I built three medical practices over the next 16 years and had to curtail some activities. Could no longer enjoy whirling rides, or watch fasting moving things, or swim (the bobbing in the horizontal position). But I really didn't have time for much other than medicine anyway.
In 1999 had a severe inner ear infection. Two years in and out of practice. Dr. Epley diagnosed 3 different problems with the vestibular portion of the inner ear, cured the BPPV, surgically closed a traumatic hole - perilymph fistula, and diagnosed chronic, hyperactive labyrinthinitis.
There is no way now to tell if any of my vertigo is coming from a central lesion (ie. MS) It's quite possible, but my vertigo is adequately explained by peripheral disease. About 4 years ago all my ear symptoms switched sides from the L to the R. At this time Dr. Epley diagnosed Autoimmune Inner Ear Disease. So it was no surprise to him when my recent problems were dx'd as MS.
It is interesting that when I started Provigil for the severe fatigue - a miracle drug FDA-approved to treat the fatigue of certain kinds of sleep apnea, narcolepsy and shift-work fatigue. It is a brain stimulant not in the amphetamine category. I was able to move beyond the fatigue and actually accomplish some things, like doing laundry, or running an errand (though riding in the car stimulates the vertigo very badly. I'm mostly homebound.) It is used routinely off-label for the fatigue of MS. It stabilizes the vertigo nicely and I promptly was able to lower my Vicodin use. (One reason I'm not terribly worried about addiction) In reading the MS forums/chat rooms, it is clearly the favored fatigue drug. The major problem with it is that it becomes easy to overdo, both mentally and physically. If you do overdo the crash can be horrendous and long. I am trying to learn to stop early, because I don't see the signs of fatigue.
I can tell you though, just being able to DO SOMETHING (like participate here) is so beguiling, I usually don't stop soon enough. Today the screen is jittering back and forth and, my failed resolve from yesterday to give the forum a pass for the day will have to happen today.
I am going to ask my new neuro if he thinks any of the meds used for neuropathy (like Lyrica or Topomax) might help the most disabling symptom of the eye movements stimulating the dizziness. If nothing works and the hydrocodone is taken away, I would be completely incapacitiated.
I'll see you all tomorrow. Quix
Patsy,
You're right, you do have to be in the situation to understand it. And it's true that no matter how assertive you are, no matter how prepared you come with questions and a description of your symptoms, if the doctors don't believe you then all else is irrelevant. And sometimes the more assertive you are the worse it can get (I got "assertive" a couple of times after getting angry with doctors), because if you insist there is something wrong with you, some of them don't take kindly to that--it doesn't jibe with their conclusions about you. I also went from doctor to doctor (about 20 in all) since '94. I always wondered what my insurance carrier thought of me. Once, when I tried to get insurance with Blue Cross after having to convert to COBRA the guy on the phone said "They (the doctors) *have* to know what is wrong with you after (at that point) 10 years," and I was like, "No, they actually really don't." Needless to say I was denied.
"People like you" is not a good sign. Obviously he is lumping you in with all other nurses (or his opinion of nurses). In addition, I think neurologists are influenced by their extensive psych training, more so than other doctors, because they seem to jump on the psychosomatic bandwagon quicker.
I saw Quixotic's post to you above. You should tell her your sypmtoms and what tests you've had done and see what she thinks. One more thing--I know MS is still a concern of yours in spite of the negative tests you've had. (It actually is still a concern of mine (though I know it's very unlikely) in spite of my negative MRIs and LP). The MS specialist I saw at Mayo (after initially saying in a letter to me after my first visit that she thought MS could be ruled out if my LP turned out to be normal-which it did), said in her follow-up note after my second visit that (in spite of the negative MRIs and LP) although she could not give me a dx of MS at that time she could not 100% rule it out either. The dysautonomia doctor didn't even consider it (but he seemed to only acknowledge those symptoms that fit in with a peripheral neuropathy-what he thinks I have--and not the ones that indicate a possible CNS problem). I'm not saying this to give you false "hope," just letting you know that apparently there is some difference of opinion even among MS specialists as to whether negative MRIs and negative LP 100% conclusively rule out MS.
You're right, you do have to be in the situation to understand it. And it's true that no matter how assertive you are, no matter how prepared you come with questions and a description of your symptoms, if the doctors don't believe you then all else is irrelevant. And sometimes the more assertive you are the worse it can get (I got "assertive" a couple of times after getting angry with doctors), because if you insist there is something wrong with you, some of them don't take kindly to that--it doesn't jibe with their conclusions about you. I also went from doctor to doctor (about 20 in all) since '94. I always wondered what my insurance carrier thought of me. Once, when I tried to get insurance with Blue Cross after having to convert to COBRA the guy on the phone said "They (the doctors) *have* to know what is wrong with you after (at that point) 10 years," and I was like, "No, they actually really don't." Needless to say I was denied.
"People like you" is not a good sign. Obviously he is lumping you in with all other nurses (or his opinion of nurses). In addition, I think neurologists are influenced by their extensive psych training, more so than other doctors, because they seem to jump on the psychosomatic bandwagon quicker.
I saw Quixotic's post to you above. You should tell her your sypmtoms and what tests you've had done and see what she thinks. One more thing--I know MS is still a concern of yours in spite of the negative tests you've had. (It actually is still a concern of mine (though I know it's very unlikely) in spite of my negative MRIs and LP). The MS specialist I saw at Mayo (after initially saying in a letter to me after my first visit that she thought MS could be ruled out if my LP turned out to be normal-which it did), said in her follow-up note after my second visit that (in spite of the negative MRIs and LP) although she could not give me a dx of MS at that time she could not 100% rule it out either. The dysautonomia doctor didn't even consider it (but he seemed to only acknowledge those symptoms that fit in with a peripheral neuropathy-what he thinks I have--and not the ones that indicate a possible CNS problem). I'm not saying this to give you false "hope," just letting you know that apparently there is some difference of opinion even among MS specialists as to whether negative MRIs and negative LP 100% conclusively rule out MS.
Quixotic,
I think you and I could be good friends, too. We seem to have some things in common regarding how we think. Also, I saw in another posting that you were a Spanish literature major in college and that is where you got your username from (Don Quixote). I was a literature major, too, though I dropped out. Maybe that explains the affinity we both seem to have for writing/being verbal.
Yes, I read Carol's posting and it was interesting. Perhaps there are other doctors, too, out there reading these boards and they will learn something about what patients, in general, go through as well as learn to have more respect for the insight that patients have regarding what is going on with their own bodies.
That is good you can see a neuropsychologist to help you deal with your chronic vertigo and MS. It's interesting to hear that his opinion of neurologists is similar to that of many of the people on this board. I know exactly what you mean by "invisible illness." Unless a name (that everyone recognizes) is attached to an illness, it doesn't mean anything to other people. And even sometimes when a name IS attached (like MS, lupus, etc.), if one looks ok from the outside then it is hard for others to comprehend what one is experiencing on the inside. I mean you can't actually SEE pain, nausea, dizziness, faintness, tingling, numbness, blurred vision, ringing in ears, trouble swallowing (unless someone chokes right in front of you), heat intolerance, etc., because all that is experienced from the inside, so unless someone is in a wheelchair (no offense to people in wheelchairs--I'm quite grateful I'm not in one), then most people don't have any insight into what someone with a chronic illness is experiencing, regardless of the cause. I remember years ago if I saw someone park in a handicapped parking space and then get out of the car and walk into a store I would automatically jump to the conclusion that they were not disabled and shouldn't have parked there. As I got older (and wiser) I realized there are obviously all different kinds of disability in addition to the obvious wheelchair/inability to walk (for instance, one who can't walk far w/o having breathing difficulties, etc.). Also, I remember several years ago, after more negative tests, my mother said to me, "Well, that's good news that they didn't find anything," and I was like, "No, it's NOT good. It's NOT!!" To her, understandably, negative test results meant bad things were ruled out, but I knew that it was just one more time I wasn't getting answers to what was wrong with me and I felt like it gave the doctors more ammunition in their "incredulity arsenal" against me: "Well, we've done every test known to mankind on you, what else do you want us to do??" (that sort of thing).
You've done the same thing I've done--waited for positive test results so you can offer evidence of your illness. I've been planning on writing letters literally for years to several of the doctors (mainly neuros) that discounted my symptoms, but I was also waiting for a dx before I did that. I really don't even have a definitive dx yet, but they do know that I have an autoimmune autonomic neuropathy (regardless of the cause), so I do still intend to send out a few letters to the neuros I've seen in the past. I never thought I would be writing my PCP, though, but his will be going out as soon as I get a new ink cartridge. I also waited (on my mother's advice) to send the letter to my PCP until I got in to see a new PCP (she's "paranoid" like me). I'm not holding my breath to see a neurologist, although the new PCP mentioned needing to find me one. I tried and failed--so I wish him luck.
Is your vertigo thought to be related to your MS or is this thought to be a separate problem? It sounds like maybe it is a separate problem if it started all the way back in '83, or did you have other possible MS-type symptoms back then that you now think might be related to your MS? I think you mentioned something about autoimmune inner ear disease in the past (possibly Meniere's?). My uncle has Meniere's (I think I told you this when you first posted on here). It sounds like this is a major problem for you if you had to quit being a physician due to it. Regarding the Vicodin, you mentioned it stabilizes your eye movements and thus helps with your nausea, dizziness and other vertigo symptoms. Is there any other drug (non-narcotic) that you can try that might do the same? I don't know much about drugs, but I assume you have tried other drugs for vertigo. Well, I guess it is good that you haven't had to up the dose in order for it to keep working. It sounds like you are worried that your new PCP will not agree to fill the Rx for this. Maybe your old PCP can let your new doc know that this is what has been effective for you and that nothing else has been (if that's the case), and hopefully he will be willing to keep prescribing it for you. You are a physician; you know what works best for you and what is needed to treat your symptoms, so surely they should pay some heed to that.
This may be a dumb question, but who is Fox Mulder? It sounds familiar but I can't place it.
I think you and I could be good friends, too. We seem to have some things in common regarding how we think. Also, I saw in another posting that you were a Spanish literature major in college and that is where you got your username from (Don Quixote). I was a literature major, too, though I dropped out. Maybe that explains the affinity we both seem to have for writing/being verbal.
Yes, I read Carol's posting and it was interesting. Perhaps there are other doctors, too, out there reading these boards and they will learn something about what patients, in general, go through as well as learn to have more respect for the insight that patients have regarding what is going on with their own bodies.
That is good you can see a neuropsychologist to help you deal with your chronic vertigo and MS. It's interesting to hear that his opinion of neurologists is similar to that of many of the people on this board. I know exactly what you mean by "invisible illness." Unless a name (that everyone recognizes) is attached to an illness, it doesn't mean anything to other people. And even sometimes when a name IS attached (like MS, lupus, etc.), if one looks ok from the outside then it is hard for others to comprehend what one is experiencing on the inside. I mean you can't actually SEE pain, nausea, dizziness, faintness, tingling, numbness, blurred vision, ringing in ears, trouble swallowing (unless someone chokes right in front of you), heat intolerance, etc., because all that is experienced from the inside, so unless someone is in a wheelchair (no offense to people in wheelchairs--I'm quite grateful I'm not in one), then most people don't have any insight into what someone with a chronic illness is experiencing, regardless of the cause. I remember years ago if I saw someone park in a handicapped parking space and then get out of the car and walk into a store I would automatically jump to the conclusion that they were not disabled and shouldn't have parked there. As I got older (and wiser) I realized there are obviously all different kinds of disability in addition to the obvious wheelchair/inability to walk (for instance, one who can't walk far w/o having breathing difficulties, etc.). Also, I remember several years ago, after more negative tests, my mother said to me, "Well, that's good news that they didn't find anything," and I was like, "No, it's NOT good. It's NOT!!" To her, understandably, negative test results meant bad things were ruled out, but I knew that it was just one more time I wasn't getting answers to what was wrong with me and I felt like it gave the doctors more ammunition in their "incredulity arsenal" against me: "Well, we've done every test known to mankind on you, what else do you want us to do??" (that sort of thing).
You've done the same thing I've done--waited for positive test results so you can offer evidence of your illness. I've been planning on writing letters literally for years to several of the doctors (mainly neuros) that discounted my symptoms, but I was also waiting for a dx before I did that. I really don't even have a definitive dx yet, but they do know that I have an autoimmune autonomic neuropathy (regardless of the cause), so I do still intend to send out a few letters to the neuros I've seen in the past. I never thought I would be writing my PCP, though, but his will be going out as soon as I get a new ink cartridge. I also waited (on my mother's advice) to send the letter to my PCP until I got in to see a new PCP (she's "paranoid" like me). I'm not holding my breath to see a neurologist, although the new PCP mentioned needing to find me one. I tried and failed--so I wish him luck.
Is your vertigo thought to be related to your MS or is this thought to be a separate problem? It sounds like maybe it is a separate problem if it started all the way back in '83, or did you have other possible MS-type symptoms back then that you now think might be related to your MS? I think you mentioned something about autoimmune inner ear disease in the past (possibly Meniere's?). My uncle has Meniere's (I think I told you this when you first posted on here). It sounds like this is a major problem for you if you had to quit being a physician due to it. Regarding the Vicodin, you mentioned it stabilizes your eye movements and thus helps with your nausea, dizziness and other vertigo symptoms. Is there any other drug (non-narcotic) that you can try that might do the same? I don't know much about drugs, but I assume you have tried other drugs for vertigo. Well, I guess it is good that you haven't had to up the dose in order for it to keep working. It sounds like you are worried that your new PCP will not agree to fill the Rx for this. Maybe your old PCP can let your new doc know that this is what has been effective for you and that nothing else has been (if that's the case), and hopefully he will be willing to keep prescribing it for you. You are a physician; you know what works best for you and what is needed to treat your symptoms, so surely they should pay some heed to that.
This may be a dumb question, but who is Fox Mulder? It sounds familiar but I can't place it.
I just wanted to add my thanks to Quix for all she has been doing on this board. I have only been visiting this site for the last month, but during that time she has helped me tremendously. I also see everyday where she posts responses to people in various forums with some really helpful information and advice. I know I speak for many when I say that you are greatly appreciated!
I myself began visiting this site because I wanted answers that I couldn't get from my doctors. Believe me, I have had my share of bad docs, but I have also had some good ones. My rheumatologist I am currently seeing is very attentive and always makes me feel like I am the only patient in the building when I go to see him. He always listens to everything I have to say, and he really explains things well. My frustration I feel right now is not towards him but towards the fact that he really doesn't know what is wrong with me. This is why I have to go see other specialists and then I end up back at square one because those specialists do not listen to me. I think that the medical field is still learning about new diseases (like fibromyalgia and CFS), and sometimes the docs just truly do not know the answer that you are looking for. What is unfortunate is that sometimes doctors handle that the wrong way and start blaming everything on psychological factors. This is always offensive to a patient, and immediately makes you go on the defensive. Other doctors, like my rheumatologist, will be honest with you and tell you they don't know. That type of honesty is refreshing. As with anything, you have to take the bad with the good. Not everyone enters the medical profession for the right reasons. Fortunately, through technology and the internet, patients can really arm themselves with an artillary of information. Sites like this are definitely a great thing for us to have.
I myself began visiting this site because I wanted answers that I couldn't get from my doctors. Believe me, I have had my share of bad docs, but I have also had some good ones. My rheumatologist I am currently seeing is very attentive and always makes me feel like I am the only patient in the building when I go to see him. He always listens to everything I have to say, and he really explains things well. My frustration I feel right now is not towards him but towards the fact that he really doesn't know what is wrong with me. This is why I have to go see other specialists and then I end up back at square one because those specialists do not listen to me. I think that the medical field is still learning about new diseases (like fibromyalgia and CFS), and sometimes the docs just truly do not know the answer that you are looking for. What is unfortunate is that sometimes doctors handle that the wrong way and start blaming everything on psychological factors. This is always offensive to a patient, and immediately makes you go on the defensive. Other doctors, like my rheumatologist, will be honest with you and tell you they don't know. That type of honesty is refreshing. As with anything, you have to take the bad with the good. Not everyone enters the medical profession for the right reasons. Fortunately, through technology and the internet, patients can really arm themselves with an artillary of information. Sites like this are definitely a great thing for us to have.
good point...however, they don't know what to do with my twitching...and, since I am not going to die from it, they don't bother...
I don't think that what Thesurfer wrote was at all an indictment of anyone on this board (not sure where people get that from); I think it was an indictment of doctors in general, so I don't understand the outrage one or two posters had about what Surfer wrote, especially the one calling him an a--le. His was obviously a statement regarding how some patients don't feel comfortable enough with their doctors (due to their physicans' arrogance or inability to listen/trust their patients) and/or aren't given the time to voice their concerns and ask questions about their ill health, even though some clearly have something serious neurologically going on. It wasn't a statement condemning anyone who is seeking support or wanting to share their symptoms and experiences with others on this board. My guess is that Surfer himself (or someone Surfer knows) has had some bad experiences with doctors, has symptoms he/she has not gotten satisfactory answers to/help for, and is frustrated and angry about those encounters with doctors. It doesn't take a rocket scientist to figure that out. On the flip side, I would say that people who have NOT had this bad overall experience are being judgmental of those who have. All I can say to those who have not been treated badly by their doctors is that you ought to be grateful to no end.
I also had a very concrete and coherent list of questions to ask my doctors when I went in, and sometimes I asked those questions and sometimes I didn't, depending on the attitude of the doctor towards me in that appnt. once I got in there. The arrogant do not listen well (and this isn't unique to doctors). It took me almost 13 years to get a dx/confirmation that I had a neurological problem. And what does my PCP do when I return to see him after I finally get dxd by an out-of-town neurologist after 13 horrendous years and? He, who didn't believe there was an organic basis to my symptoms, dumps me, and he wasn't nice about it either. He says he had no choice because I didn't trust him (laughable not to mention backwards), but in reality he is probably worried about a lawsuit. I know this is a rare event (doctors terminating patients) and it was extremely upsetting to me. I couldn't believe what he did and I went home and later that night started having trouble breathing after sobbing out of frustration and anger, with my airways closing shut from my asthma. I am not going to let what he did to me go unanswered. I've just typed up a 7 1/2-page letter that I intend to send to the s.o.b. In the meantime, I hope his (false) belief regarding what I intend to do burns a hole in his soul--maybe he will have a glimmer of the anxiety (among other things) I have experienced for 13 years. Anyway, it says more about him than it says about me as a person and I will be telling him that. One thing I know for sure is that it will take him 20 minutes (literally :) to read what I wrote (and I wrote about everything that took place). Guess he won't have a choice but to listen to me now...
I also had a very concrete and coherent list of questions to ask my doctors when I went in, and sometimes I asked those questions and sometimes I didn't, depending on the attitude of the doctor towards me in that appnt. once I got in there. The arrogant do not listen well (and this isn't unique to doctors). It took me almost 13 years to get a dx/confirmation that I had a neurological problem. And what does my PCP do when I return to see him after I finally get dxd by an out-of-town neurologist after 13 horrendous years and? He, who didn't believe there was an organic basis to my symptoms, dumps me, and he wasn't nice about it either. He says he had no choice because I didn't trust him (laughable not to mention backwards), but in reality he is probably worried about a lawsuit. I know this is a rare event (doctors terminating patients) and it was extremely upsetting to me. I couldn't believe what he did and I went home and later that night started having trouble breathing after sobbing out of frustration and anger, with my airways closing shut from my asthma. I am not going to let what he did to me go unanswered. I've just typed up a 7 1/2-page letter that I intend to send to the s.o.b. In the meantime, I hope his (false) belief regarding what I intend to do burns a hole in his soul--maybe he will have a glimmer of the anxiety (among other things) I have experienced for 13 years. Anyway, it says more about him than it says about me as a person and I will be telling him that. One thing I know for sure is that it will take him 20 minutes (literally :) to read what I wrote (and I wrote about everything that took place). Guess he won't have a choice but to listen to me now...
Caramac,
I read your post on your symptoms and exchange with Quixotic and I hope you find an answer to what is making you sick and also gather some insight from this board. Don't let anyone brand you a hypochondriac or make you think that you are overestimating the seriousness/severity of your symptoms. You are the best judge of how you feel now compared to what you used to feel like prior to the onset of your symptoms. I allowed myself to be convinced at times that maybe I wasn't really as sick as I felt (whatever that means!) because no one would acknowledge it and no name was attached to it. Then I would be so ill and feel as though I was going to go unconscious, and that would "reassure" me that there was something seriously wrong with my body regardless of what the doctors said or thought. You are right that sometimes doctors just don't know what is wrong with you (based on continuing negative test results, etc.), and that is ok (for the time being) so long as your doctors believe there IS something wrong and will continue to work with you on finding what that something is. It does take months or even a few years sometimes to get a diagnosis (or to at least have tests show that there is some kind of neurologic problem/neuropathy even w/o a definitive dx), but I hope it doesn't take as long in your case as it took for me.
I read your post on your symptoms and exchange with Quixotic and I hope you find an answer to what is making you sick and also gather some insight from this board. Don't let anyone brand you a hypochondriac or make you think that you are overestimating the seriousness/severity of your symptoms. You are the best judge of how you feel now compared to what you used to feel like prior to the onset of your symptoms. I allowed myself to be convinced at times that maybe I wasn't really as sick as I felt (whatever that means!) because no one would acknowledge it and no name was attached to it. Then I would be so ill and feel as though I was going to go unconscious, and that would "reassure" me that there was something seriously wrong with my body regardless of what the doctors said or thought. You are right that sometimes doctors just don't know what is wrong with you (based on continuing negative test results, etc.), and that is ok (for the time being) so long as your doctors believe there IS something wrong and will continue to work with you on finding what that something is. It does take months or even a few years sometimes to get a diagnosis (or to at least have tests show that there is some kind of neurologic problem/neuropathy even w/o a definitive dx), but I hope it doesn't take as long in your case as it took for me.
I think you have to be in this situation to understand it. I've been to numerous doctors regarding my neuro problems. I've pretty much been blown off by most of them...labeled with FMS/CFS etc......I'm not afraid to ask questions (I'm an RN). The problem is....if they don't believe you, you get nowhere. Unfortunately, this causes us to go from doctor to doctor in search of the answer. There were times when I thought the doc was good but then I later read my chart and they wrote stuff like CFS/FMS, psychological etc...This is very costly to my insurance company as I keep moving on. Now I know why people sue and why healthcare is so expensive. I recently saw a new neuro (#5). He seemed ok the first visit. The second visit was awful. I went to see him for numbness, tingling, muscle pain and weakness and twitching. I asked him about my paresthesia that runs down my entire left side. He said " I can't pinpoint one spot in the nervous system that is causing this". The he ordered a sleep study (for what????) and gave me a prescription for some horrible medication that I would never even consider taking. He also said I should not tell the doctor what I thing is wrong because then you get immediately blown off. He said "people like you", meaning nurses, do this all the time. My point is, no matter how assertive you are, if they don't believe you or don't care(which is most of them) then there's no point. As far as paying them, once you submit your insurance card, they get pain. No matter how bad they were.
Let me just say something here...I have throughout the years been a very strong advocate for my children's medical care, being a single parent, it's IMPERATIVE! You learn very early to voice your concerns and questions to the doctors caring for your children. I have absolutely no trouble telling the doctors what I want or expect from them. I think that working around doctors has made me less fearful of being forthcoming with my questions and getting the response that I want. I know that they don't have hours on end to spend answering questions, that's why I go with a very detailed list of questions and I do not ...nor have I ever... walk(ed) out without all of them being answered and my children's needs attended to. The first line of defense is the parent for their own child. Having a niece with cardiac, kidney, and orthopedic issues I often times accompanied my sister and niece to her appointments to the hospitals and specialists because my sister would become overwhelmed with the medical terms. I've been there through many of her surgeries and had to stand by her bedside to comfort my sister who would become overwhelmed in the Intensive Care Units with all of the surroundings and such. I know exactly what to do when it comes to asking questions. I do not have any shame though in going to a website if I discover that I have a question after I've left the doctor's office and asking for assistance until I see the doctor again.
I think it's great that these websites exist and are here to help some patients get through the complexities of their diagnoses. I don't think a diagnosis should be made here but truth and understanding about an illness can become clearer by having a few questions answered that might not otherwise receive one. It's through support that some patients gain more knowledge and that's what I've seen here, a whole lot of support and compassion. I do not see where it would serve any purpose to come here and begin blasting anyone for seeking and wanting to know answers. I have noticed on this website that it's clearly stated that if this is an emergency to go to an emergency room. Sometimes someone may not know they really have an emergent situation until they come here and ask their question ...the patient without any real medical background or knowledge wouldn't and it's expected that they don't.
I just want to say Kudos to the developers and contributors of this website that they've given the general population a place to voice their concerns and come to for physical and emotional support as well as receive answers. Thank you very much for allowing me to post questions here and receive answers to them. I am so glad that I've found this website!!!!
Quix you've been so great to spend so much of your time and energy since your retirement and during your illness to come and help others. For this I commend you and recognize fully the efforts that you've put forth on this board. The research that you have done to help others is commendable. I hope and pray that they find a cure for MS one day. I hope that each day that you feel strong, I pray for you and others afflicted with MS and other ailments. I hope that they find cures for all ailments and illnesses. I just want to say thank you Quix for being so diligent in your responses to patients who have addressed concerns about their illness and surgeries on here. We're all so fortunate that you come to this forum and others on this website with your expertise, thank you so much for your time!!!
NaniKai
I think it's great that these websites exist and are here to help some patients get through the complexities of their diagnoses. I don't think a diagnosis should be made here but truth and understanding about an illness can become clearer by having a few questions answered that might not otherwise receive one. It's through support that some patients gain more knowledge and that's what I've seen here, a whole lot of support and compassion. I do not see where it would serve any purpose to come here and begin blasting anyone for seeking and wanting to know answers. I have noticed on this website that it's clearly stated that if this is an emergency to go to an emergency room. Sometimes someone may not know they really have an emergent situation until they come here and ask their question ...the patient without any real medical background or knowledge wouldn't and it's expected that they don't.
I just want to say Kudos to the developers and contributors of this website that they've given the general population a place to voice their concerns and come to for physical and emotional support as well as receive answers. Thank you very much for allowing me to post questions here and receive answers to them. I am so glad that I've found this website!!!!
Quix you've been so great to spend so much of your time and energy since your retirement and during your illness to come and help others. For this I commend you and recognize fully the efforts that you've put forth on this board. The research that you have done to help others is commendable. I hope and pray that they find a cure for MS one day. I hope that each day that you feel strong, I pray for you and others afflicted with MS and other ailments. I hope that they find cures for all ailments and illnesses. I just want to say thank you Quix for being so diligent in your responses to patients who have addressed concerns about their illness and surgeries on here. We're all so fortunate that you come to this forum and others on this website with your expertise, thank you so much for your time!!!
NaniKai
I just read the article you posted "What I've Learned From E-Patients." What a fabulous read! Thank you! I will use this. Quix
I just read Surfer's other post and I can see how people would be angry after reading what he wrote. If so, I wish they had responded on that thread instead of this one. Although I actually agree with much of what he wrote above, I agree that his other comments are just plain childish.
And just for the record, I realize that not all doctors think they are God or are arrogant; I don't want you to take offense at that. Obviously you are not of that ilk; it is clear from your posts on this board. It just happens that every single neurologist I saw (except maybe one) was extremely arrogant and dismissive of me. I have seen some doctors (other specialties) who were nice enough and listened to what I had to say over the years, but unfortunately they were not the ones that I needed (most) to get to listen to me, they found no problem in their field, and I never saw them again. Also, I did get a new PCP a couple weeks ago and he seems like a nice person and should be a good doctor to boot since my pulmonologist, whom I know is a good doctor, recommended him. I do take people as individuals but I can't say the same for many of the doctors I have seen. When people are kind/receptive to me I absolutely feel that in return.
I agree with you that the people who come to this forum are not the "general population" in that they are not the norm (including me); they are basically those who have not/did not get answers, whether it be after months or years of seeking a diagnosis. But you have to admit that there are a hell of a lot of us here--they are coming in droves every day--so we can't be all that atypical!
Speaking of psychiatry and neuropharmacology, I recently read that pediatric OCD (which I started to get symptoms of at the age of 3) is now thought to be an autoimmune disease triggered off by the strep bacteria. Have you ever heard of this? I couldn't believe this when I read it. I have never heard of a psychiatric illness being considered an autoimmune disease. Apparently it's only when the onset is in very young children that it is believed to be autoimmune. My mother always told me I started to act "weird" when I was 3 years old right after I had a bacterial infection, but I always told her that had nothing to do with it. Maybe she was right after all.
It is unbelievable that a doctor would think you like to have invasive procedures done--of all things! I can't even imagine why a doctor would think that someone would like that. God, I'm a big baby when they even take my blood (since it takes them about 50 tries and numerous phlebotomists to even find my veins).
Well, if it was done to you (a physician) I guess I shouldn't be surprised it happened to me. It's just the chronicity of it that is unfathomable ; it was like a wall that I could not get over no matter how hard I tried. Regarding your letter to one of your neurologists, I think that it really is a good thing you let them know your end of it, your perception of what took place and how it made you feel. I mean, how else will they learn if someone doesn't tell them? I'm not sure if I showed restraint by only writing 7 1/2-pages, but I do think that once I send it and picture him reading it it will give me a sense of regaining some control over my life that I haven't felt in a long time. I was very careful about what I wrote and keep reading it over and editing it, because I want to be highly accurate and not write anything out of anger that I will later wish I hadn't. I don't expect to get a response from him (as you probably didn't either), but at least I will have said what I really needed to say.
And just for the record, I realize that not all doctors think they are God or are arrogant; I don't want you to take offense at that. Obviously you are not of that ilk; it is clear from your posts on this board. It just happens that every single neurologist I saw (except maybe one) was extremely arrogant and dismissive of me. I have seen some doctors (other specialties) who were nice enough and listened to what I had to say over the years, but unfortunately they were not the ones that I needed (most) to get to listen to me, they found no problem in their field, and I never saw them again. Also, I did get a new PCP a couple weeks ago and he seems like a nice person and should be a good doctor to boot since my pulmonologist, whom I know is a good doctor, recommended him. I do take people as individuals but I can't say the same for many of the doctors I have seen. When people are kind/receptive to me I absolutely feel that in return.
I agree with you that the people who come to this forum are not the "general population" in that they are not the norm (including me); they are basically those who have not/did not get answers, whether it be after months or years of seeking a diagnosis. But you have to admit that there are a hell of a lot of us here--they are coming in droves every day--so we can't be all that atypical!
Speaking of psychiatry and neuropharmacology, I recently read that pediatric OCD (which I started to get symptoms of at the age of 3) is now thought to be an autoimmune disease triggered off by the strep bacteria. Have you ever heard of this? I couldn't believe this when I read it. I have never heard of a psychiatric illness being considered an autoimmune disease. Apparently it's only when the onset is in very young children that it is believed to be autoimmune. My mother always told me I started to act "weird" when I was 3 years old right after I had a bacterial infection, but I always told her that had nothing to do with it. Maybe she was right after all.
It is unbelievable that a doctor would think you like to have invasive procedures done--of all things! I can't even imagine why a doctor would think that someone would like that. God, I'm a big baby when they even take my blood (since it takes them about 50 tries and numerous phlebotomists to even find my veins).
Well, if it was done to you (a physician) I guess I shouldn't be surprised it happened to me. It's just the chronicity of it that is unfathomable ; it was like a wall that I could not get over no matter how hard I tried. Regarding your letter to one of your neurologists, I think that it really is a good thing you let them know your end of it, your perception of what took place and how it made you feel. I mean, how else will they learn if someone doesn't tell them? I'm not sure if I showed restraint by only writing 7 1/2-pages, but I do think that once I send it and picture him reading it it will give me a sense of regaining some control over my life that I haven't felt in a long time. I was very careful about what I wrote and keep reading it over and editing it, because I want to be highly accurate and not write anything out of anger that I will later wish I hadn't. I don't expect to get a response from him (as you probably didn't either), but at least I will have said what I really needed to say.
What I've Learned from E-Patients
Dan Hoch and Tom Ferguson
Excerpts:
As a neurologist subspecializing in epilepsy at a respected academic institution, I assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.
I'd been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters.
By telling their stories in such elaborate detail, experienced group members could offer a great deal of useful advice and guidance to those newly diagnosed...
The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor's office.
What we found surprised us. We assumed that most interactions would be support related...observed in only about 30% of the postings.
In the remaining 70% of the postings, group members provided each other with what amounted to a crash course in their shared disease...
In retrospect, the most important thing I have learned from our online group was that patients want to know about, and in most cases are perfectly capable of understanding and dealing with, everything their physician knows about their disease and its treatments.
continued....
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182328
Dan Hoch and Tom Ferguson
Excerpts:
As a neurologist subspecializing in epilepsy at a respected academic institution, I assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.
I'd been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters.
By telling their stories in such elaborate detail, experienced group members could offer a great deal of useful advice and guidance to those newly diagnosed...
The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor's office.
What we found surprised us. We assumed that most interactions would be support related...observed in only about 30% of the postings.
In the remaining 70% of the postings, group members provided each other with what amounted to a crash course in their shared disease...
In retrospect, the most important thing I have learned from our online group was that patients want to know about, and in most cases are perfectly capable of understanding and dealing with, everything their physician knows about their disease and its treatments.
continued....
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182328
I think you and I could be good friends. I have never thought that you aimed any offense toward me. It's so clear that the medical profession "done you wrong," and it would be hard to be even-minded after what you've been through, though I think you manage it.
Did you read that essay on E-Patients that Carol posted? It is fabulous!
I see a neuropsychologist whose specialty is people with vestibular disorders and people with "invisible" illnesses. The way we are treated by doctors and by other people, in general, cause special problems with self-esteem and depression. He is the gentlest man, caring and very measured in his words and opinions. Even he has little good to say about the personalities of neurologists. He says they are by far the most uniformly arrogant of all the medical specialties. Surgeons, on the other hand.....
I have not yet sent my "nastygram." I have been waiting for one piece of evidence after another, so it hasn't been mailed. I've also edited it probably 2 dozen times, so that - at no time - could I appear to be "hysterical." Also, I've just been notified that my PCP is retiring and I need to find a new one - within the same health plan as the "evil neuro". I have a "catch" that may make it very hard to find someone to take over my care. I don't want semi-threatening nasty letters circulating until I find a new doc.
Here's my dilemma. The vertigo has my head roaring and when I am tired ANY movement of my eyes sends paroxysms of nauseating dizziness. I have tried to explain this to neurologists for more than 20 years. None of them has ever had a clue to what I was describing. I have had vertigo -low level - since 1983. But it usually wasn't enough to interfere in my life except during occasional brief flare-ups. After the inner ear infection in 1999 it became disabling. When my eyes begin stimulating the whirls of dizziness I am done for the day. About all I can do is hold my head and cry until I fall alseep. Then I am okay until later on the next day.
At some point I discovered that a low dose of hydrocodone (Vicodin ) stabilizes my eye movements/symptoms enough to allow me to continue functioning for a few more hours. I use about 15mg to 25mg a day. Yes, Yes..".My name is Quix and I am a Vicodin addict", lol. I've been on the same dose for more than four years. It would be easier if I could say I had pain. But it is not pain. It is disorienting dizziness and inability to think, read, talk, or walk straight. My last PCP refilled my scripts - somewhat reluctantly - but also with compassion. We talked often about the perils of needing more & more (which I haven't) and of addiction. I am currently in absolute terror of not being able to find someone who is willing to give me the med on a daily, ongoing basis.
I have always been a huge believer in being generous with pain relief. As a physician my attitude was this: "When I go to hell, it will be because I may have given meds to an addict, and not because I withheld relief from someone who was really suffering." I lived by that and now I have to find someone who is willing to relieve my "pain." I can't tell you have I dread being told "no" and getting "that look" from another doctor. Now, you've (and everybody else) has heard my deepest fear.
Yes, I am stunned and dismayed at the numbers of people who come here suffering. I try to realize how many tens of thousands of neurologists there are, and that they see hundreds of thousands of patients a day. We see only a tiny number here, but it is disheartening. If nothing else, we help people realize they are not alone. (hmm, I sound like Fox Mulder..)
Well, I am rambling. I have stopped answering questions for awhile, when I realized my answers were becoming more curt and my feelings less compassionate. The strain and fatigue of the screen reading and the research has made me too tired, so I'm taking a little break.
Annie, you serve a great role here. Keep on keepin' on! Quix
Did you read that essay on E-Patients that Carol posted? It is fabulous!
I see a neuropsychologist whose specialty is people with vestibular disorders and people with "invisible" illnesses. The way we are treated by doctors and by other people, in general, cause special problems with self-esteem and depression. He is the gentlest man, caring and very measured in his words and opinions. Even he has little good to say about the personalities of neurologists. He says they are by far the most uniformly arrogant of all the medical specialties. Surgeons, on the other hand.....
I have not yet sent my "nastygram." I have been waiting for one piece of evidence after another, so it hasn't been mailed. I've also edited it probably 2 dozen times, so that - at no time - could I appear to be "hysterical." Also, I've just been notified that my PCP is retiring and I need to find a new one - within the same health plan as the "evil neuro". I have a "catch" that may make it very hard to find someone to take over my care. I don't want semi-threatening nasty letters circulating until I find a new doc.
Here's my dilemma. The vertigo has my head roaring and when I am tired ANY movement of my eyes sends paroxysms of nauseating dizziness. I have tried to explain this to neurologists for more than 20 years. None of them has ever had a clue to what I was describing. I have had vertigo -low level - since 1983. But it usually wasn't enough to interfere in my life except during occasional brief flare-ups. After the inner ear infection in 1999 it became disabling. When my eyes begin stimulating the whirls of dizziness I am done for the day. About all I can do is hold my head and cry until I fall alseep. Then I am okay until later on the next day.
At some point I discovered that a low dose of hydrocodone (Vicodin ) stabilizes my eye movements/symptoms enough to allow me to continue functioning for a few more hours. I use about 15mg to 25mg a day. Yes, Yes..".My name is Quix and I am a Vicodin addict", lol. I've been on the same dose for more than four years. It would be easier if I could say I had pain. But it is not pain. It is disorienting dizziness and inability to think, read, talk, or walk straight. My last PCP refilled my scripts - somewhat reluctantly - but also with compassion. We talked often about the perils of needing more & more (which I haven't) and of addiction. I am currently in absolute terror of not being able to find someone who is willing to give me the med on a daily, ongoing basis.
I have always been a huge believer in being generous with pain relief. As a physician my attitude was this: "When I go to hell, it will be because I may have given meds to an addict, and not because I withheld relief from someone who was really suffering." I lived by that and now I have to find someone who is willing to relieve my "pain." I can't tell you have I dread being told "no" and getting "that look" from another doctor. Now, you've (and everybody else) has heard my deepest fear.
Yes, I am stunned and dismayed at the numbers of people who come here suffering. I try to realize how many tens of thousands of neurologists there are, and that they see hundreds of thousands of patients a day. We see only a tiny number here, but it is disheartening. If nothing else, we help people realize they are not alone. (hmm, I sound like Fox Mulder..)
Well, I am rambling. I have stopped answering questions for awhile, when I realized my answers were becoming more curt and my feelings less compassionate. The strain and fatigue of the screen reading and the research has made me too tired, so I'm taking a little break.
Annie, you serve a great role here. Keep on keepin' on! Quix
Nani,
I just wanted to say that if you can get a doctor to listen to you for 2 hours and 35 minutes straight, God bless you and more power to you. Sounds like you know how to handle them and get them to do what you need. I should have hired you to go to the doctors with me.
I just wanted to say that if you can get a doctor to listen to you for 2 hours and 35 minutes straight, God bless you and more power to you. Sounds like you know how to handle them and get them to do what you need. I should have hired you to go to the doctors with me.
I just read your last post on this thread but I will try to respond to it tomorrow. I am also getting tired and my butt is getting sore from sitting at the computer for so long. I think the posts above re: Lextgrim crossed paths (all three posting at once); anyway, I will stop posting for tonight.
All but one of the 5 neurologists I've seen was rude and arrogant. I personally, have lost all faith in most physicians.
Nani, you do seem to have your Drs well-trained. You're lucky to have access to several that meet your needs.
Patsy, your experience is disheartening. Of all the diagnoses that doctors have been reluctant to embrace or even be open-minded about I think Fibro and CFIDS are at the top. I know I was - I didn't know I was - until one of my bright, articulate teens in my practice developed pain and fatigue and had to enter an alternative high school, just to keep up. I went round and 'round thinking "school avoidance" or "depression." Finally I did some intensive reading on the subject of Fibro in kids. Overnight I became a believer and began working with the girl and her mom. I learned so much.
Since then I have so many friends with fibro. When I was in limbo without a diagnosis for my weakness and spasticity I had fatigue that was so severe I couldn't even describe it. If I did no one really heard it. To say that "one day of overdoing causes a crash that takes days to recover from" sounds so melodramatic. People do not believe you. I knew I was tired from the vertigo - and I understood why AND I could explain it.
But when the fatigue of MS laid in on top of the other fatigue, I just stopped doing everything. Even my family began thinking of me as lazy. They explained it away as depression from having lost my profession. I was too tired to try to keep trying to tell them - because I didn't know myself. I did a lot of reading on CFIDS, because I thought that was what it might be. When your own father starts making comments about how useless you've become, it hits hard.
I imagine - but don't know - that the fatigue I have with the MS is something like what you go through with fibro. But, I don't have pain, thank God! I can't imagine the two together.
I guess, I'm trying to say that I'm sorry you've had to be so mistreated by the only people available to help you and at the same time suffer from an invisible disease. Your voice here certainly is a useful one. Quix
Patsy, your experience is disheartening. Of all the diagnoses that doctors have been reluctant to embrace or even be open-minded about I think Fibro and CFIDS are at the top. I know I was - I didn't know I was - until one of my bright, articulate teens in my practice developed pain and fatigue and had to enter an alternative high school, just to keep up. I went round and 'round thinking "school avoidance" or "depression." Finally I did some intensive reading on the subject of Fibro in kids. Overnight I became a believer and began working with the girl and her mom. I learned so much.
Since then I have so many friends with fibro. When I was in limbo without a diagnosis for my weakness and spasticity I had fatigue that was so severe I couldn't even describe it. If I did no one really heard it. To say that "one day of overdoing causes a crash that takes days to recover from" sounds so melodramatic. People do not believe you. I knew I was tired from the vertigo - and I understood why AND I could explain it.
But when the fatigue of MS laid in on top of the other fatigue, I just stopped doing everything. Even my family began thinking of me as lazy. They explained it away as depression from having lost my profession. I was too tired to try to keep trying to tell them - because I didn't know myself. I did a lot of reading on CFIDS, because I thought that was what it might be. When your own father starts making comments about how useless you've become, it hits hard.
I imagine - but don't know - that the fatigue I have with the MS is something like what you go through with fibro. But, I don't have pain, thank God! I can't imagine the two together.
I guess, I'm trying to say that I'm sorry you've had to be so mistreated by the only people available to help you and at the same time suffer from an invisible disease. Your voice here certainly is a useful one. Quix
I can't even tell you how many nights that I avoided sleep just to avoid the pain in my body caused by Fibromyalgia. I did not even know what was going on ...all I knew was that I was feeling it most at night as I tried to sleep, my body would begin aching like I was suffering from an extraordinarily high fever. I wrestled with the pain and eventually gave up sleeping. I was attending the paralegal classes and I didn't have energy to participate in the daily regime of having to go online for my assignments and required research from lack of sleep. For me it was a viscious chain of events that took place and the final diagnosis of Fibromyalgia by my doctor. I was going through a great deal of stress because I wanted to stay in the top percent of my class in school, I knew what this would mean in the end. At the same time I was struggling with being conflicted because my Mother was seriously ill with lung cancer. I would call her on the phone and sometimes she was able to speak and other times she would just listen. I knew that she wasn't doing well and I wanted to be with her, she lived in Iowa and I'm in California. Being unemployed at that time was the worst scenario ever for me because I wanted to be with my Mom!! I remember one conversation that I had with her one night when I was at my very worst for the pain I was going through. She told me that everything would be all right and that she would be okay, to not worry so much and that if anything were to happen to her that my family would notify me immediately. I hung up the phone, sobbing uncontrollably and hanging on to her every word. Over the next few days, the pain got even worse and it sent me to ER to get some relief. The doctor told me that stress is a trigger, lack of sleep was also another and was advised to go home and try to rest...giving me nothing to relax or ease the pain, I headed home. For once in my life I was too exhausted to argue with the doctor or even consider that I needed something more than just to sleep.
At my doctor's appointment the next day (requirement of the clinic's patients if seen in ER to call for an appointment the next day) I was informed that I had all the symptoms of Fibromyalgia. I, to this day do not take anything for it other than the Ibuprofen every 8 hours, (restricted from taking aspirin, GERD). I do take my other pain meds and I think this keeps the pain at an even keel, tolerable with the meds, intolerable and horrendous without. I truly just need to know what triggers this painful process and do all I can to avoid it.
The only real time that I have any problems with this now is when I'm missing my Mom more than ever and sleep won't come...
At my doctor's appointment the next day (requirement of the clinic's patients if seen in ER to call for an appointment the next day) I was informed that I had all the symptoms of Fibromyalgia. I, to this day do not take anything for it other than the Ibuprofen every 8 hours, (restricted from taking aspirin, GERD). I do take my other pain meds and I think this keeps the pain at an even keel, tolerable with the meds, intolerable and horrendous without. I truly just need to know what triggers this painful process and do all I can to avoid it.
The only real time that I have any problems with this now is when I'm missing my Mom more than ever and sleep won't come...
First off, Annie, people here are reacting so vehemently to thesurfer's previous post (the one immediately prior to this one) where he tells everyone who comes here to complain of their tingling, twitches and tics to calm down and "quit thinking you're dying." He follows that up with the statement, "You're all going crazy."
He may have been making a comment about the pitfalls of health hypervigilance, but his comments are smug, crude, ignorant, immature, and dismissive; the same complaint he has about doctors. I think the outrage at his comments is appropriate. In a post to someone else yesterday he stated that "if the neurologist caring for a posteur's son "didn't know the child's diagnosis...he is a quack!" Again, I bristle at universal generalizations. Not all doctors "cultivate a godlike persona" nor are all doctors who don't know the answers "quacks."
However....
The people whom come to a forum like this are not the general population. They are, with very few exceptions, frightened and/or ill and without answers. Many - and I can name two right now - have been treated cruelly and possibly criminally by doctors. Some appear to be getting good care, but their fear outruns the amount of imformation they have been given. Sometimes that information is just not available. Sorry guys, but the answers can be very, very elusive. Here there is support, sometimes an explanation, and sometimes information their doctors haven't thought of. Forums like this are invaluable.
We all agree that there are too many doctors, though, who blame what they don't yet know or understand on the patient. This IS criminal, in my mind. As we learn more, I believe that the field of "psychiatry" will disappear and merge into something more like "neuropharmacology."
BTW, Annie, I have also written a letter to the neuro that hinted quite broadly, not only that I was hystercial, but that I was feigning symptoms in order to obtain invasive medical procedures. However, my "nastygram" is only three pages long - representing 2 years of failure on his part. At 7 1/2 pages for 13 years, I think you have shown remarkable restraint!
We are all here for a reason, and if anyone doesn't like what they read here, they are welcome to stop reading leave.
Quix
He may have been making a comment about the pitfalls of health hypervigilance, but his comments are smug, crude, ignorant, immature, and dismissive; the same complaint he has about doctors. I think the outrage at his comments is appropriate. In a post to someone else yesterday he stated that "if the neurologist caring for a posteur's son "didn't know the child's diagnosis...he is a quack!" Again, I bristle at universal generalizations. Not all doctors "cultivate a godlike persona" nor are all doctors who don't know the answers "quacks."
However....
The people whom come to a forum like this are not the general population. They are, with very few exceptions, frightened and/or ill and without answers. Many - and I can name two right now - have been treated cruelly and possibly criminally by doctors. Some appear to be getting good care, but their fear outruns the amount of imformation they have been given. Sometimes that information is just not available. Sorry guys, but the answers can be very, very elusive. Here there is support, sometimes an explanation, and sometimes information their doctors haven't thought of. Forums like this are invaluable.
We all agree that there are too many doctors, though, who blame what they don't yet know or understand on the patient. This IS criminal, in my mind. As we learn more, I believe that the field of "psychiatry" will disappear and merge into something more like "neuropharmacology."
BTW, Annie, I have also written a letter to the neuro that hinted quite broadly, not only that I was hystercial, but that I was feigning symptoms in order to obtain invasive medical procedures. However, my "nastygram" is only three pages long - representing 2 years of failure on his part. At 7 1/2 pages for 13 years, I think you have shown remarkable restraint!
We are all here for a reason, and if anyone doesn't like what they read here, they are welcome to stop reading leave.
Quix
I feel that my comments and post were appropriately placed in the correct thread. The comments thesurfer made in the other thread were directed to that particular person whereas, the comments above were directed at everyone in general.
I know what works for me when I visit a doctor and I employ that each and every visit, no matter who the doctor is or what specialty. I will admit that there have been a few doctors who got under my skin and when they did, I consulted then with the clinic manager and the physician in charge of all of the residents in the practice (I was a patient in a major teaching clinic). I didn't have a problem with going higher up if my needs were not being met or something was not addressed as I felt it should've been during my appointment. I might have left a clinic a little miffed, angry and feeling as though I didn't get something answered but if that ever happened I got straight to the bottom of the issue, I never let it really continue. Residents in this teaching clinic are there for two or three years and then they move on after graduation, I saw some graduate that I didn't feel deserved a license and I saw some graduate that I really wished them well in their future practice. Bedside manner is not something aquired, it's learned. When physicians are in the learning phase, there's so much going on academically that some just never learn the bedside manners that really some patients do need. (Personally in all the time that I worked in hospitals, I saw maybe a hand full of physicians that I thought really had the true compassion it took for their specialty, ie oncology, infectious diseases, cardiology to name a few).
I would never lump sum all physicians in the category of cold and heartless because clearly not all are like that. I know what I look for from a physician and if I do not see that within the first few visits, I do not return to them, there's nothing saying that I have to be subjected to cruel remarks or misdiagnosed illnesses so I guess I'm a little proactive in that regard also.
I'm sorry that anyone has had to deal with a physician who has displayed arrogrance or disdain towards them while in treatment.
The Orthopedic Surgeon that I am currently seeing has a PA and LVN/RN who assist him in his practice. I would say that on a daily average that my surgeon will see five patients, the rest are attended to by the PA, LVN/RN and the communication between them is very open. I've learned that the reason why my surgeon is like this is because he is highly intelligent for one, another is that when he wants to see a patient, he will take a considerable amount of time with them and respond to every single question they ask of him. I recently experienced this when I had an appointment to go over my MRI results. My appt. was for 2:45 and I left the office at 5:20 pm, and the entire time I was sitting in the office going over not only the MRI results but my DEXA Scan results, my labs, getting questions answered and one thorough exam that I was amazed how thorough it was.
All in all it just is dependent upon the physician, how busy the practice is, how overbooked he might be, office staff trained to run the office efficiently throughout the day. It's not always the physician's fault if things don't run as smoothly that day, if the office is backed up and he can't take time to answer every single question. Another determining factor is whether they have emergency surgeries or got back late from morning surgeries. Not every case in OR can go as smoothly as the surgeon hopes. I guess what I'm trying to say is that this is a 50/50 thing where it is better to go with questions on paper so that nothing is left out and to try to be patient with the physician who tries really hard to be a good physician to ALL of his/her patients. Their lives are just as hectic if not more so than our own and even though they take the hipocratic oath, not every day in the office will be perfect, there may be slip ups but Gosh, not all are perfect...but THEY DO TRY...
NaniKai
I know what works for me when I visit a doctor and I employ that each and every visit, no matter who the doctor is or what specialty. I will admit that there have been a few doctors who got under my skin and when they did, I consulted then with the clinic manager and the physician in charge of all of the residents in the practice (I was a patient in a major teaching clinic). I didn't have a problem with going higher up if my needs were not being met or something was not addressed as I felt it should've been during my appointment. I might have left a clinic a little miffed, angry and feeling as though I didn't get something answered but if that ever happened I got straight to the bottom of the issue, I never let it really continue. Residents in this teaching clinic are there for two or three years and then they move on after graduation, I saw some graduate that I didn't feel deserved a license and I saw some graduate that I really wished them well in their future practice. Bedside manner is not something aquired, it's learned. When physicians are in the learning phase, there's so much going on academically that some just never learn the bedside manners that really some patients do need. (Personally in all the time that I worked in hospitals, I saw maybe a hand full of physicians that I thought really had the true compassion it took for their specialty, ie oncology, infectious diseases, cardiology to name a few).
I would never lump sum all physicians in the category of cold and heartless because clearly not all are like that. I know what I look for from a physician and if I do not see that within the first few visits, I do not return to them, there's nothing saying that I have to be subjected to cruel remarks or misdiagnosed illnesses so I guess I'm a little proactive in that regard also.
I'm sorry that anyone has had to deal with a physician who has displayed arrogrance or disdain towards them while in treatment.
The Orthopedic Surgeon that I am currently seeing has a PA and LVN/RN who assist him in his practice. I would say that on a daily average that my surgeon will see five patients, the rest are attended to by the PA, LVN/RN and the communication between them is very open. I've learned that the reason why my surgeon is like this is because he is highly intelligent for one, another is that when he wants to see a patient, he will take a considerable amount of time with them and respond to every single question they ask of him. I recently experienced this when I had an appointment to go over my MRI results. My appt. was for 2:45 and I left the office at 5:20 pm, and the entire time I was sitting in the office going over not only the MRI results but my DEXA Scan results, my labs, getting questions answered and one thorough exam that I was amazed how thorough it was.
All in all it just is dependent upon the physician, how busy the practice is, how overbooked he might be, office staff trained to run the office efficiently throughout the day. It's not always the physician's fault if things don't run as smoothly that day, if the office is backed up and he can't take time to answer every single question. Another determining factor is whether they have emergency surgeries or got back late from morning surgeries. Not every case in OR can go as smoothly as the surgeon hopes. I guess what I'm trying to say is that this is a 50/50 thing where it is better to go with questions on paper so that nothing is left out and to try to be patient with the physician who tries really hard to be a good physician to ALL of his/her patients. Their lives are just as hectic if not more so than our own and even though they take the hipocratic oath, not every day in the office will be perfect, there may be slip ups but Gosh, not all are perfect...but THEY DO TRY...
NaniKai
I think that you are probably some little punk, sitting around with nothing better to do, so you decided to be an idiot and post this ****. There are truly sick people in this world, we communicate on these type of forums to try to find an answer, or possibly to see what diagnosis others have had with our same symptoms. I, for one have had health issues for the past 8 years, I have had over 30,000 dollars in doc bills, its not fun when the docs don't know what to tell you. GET A LIFE, GROW UP, and quit being a ***hole!!!!!
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