Aa
If you were going to travel in search of a Dx, where would you go?
I just "celebrated" my third anniversary of being in limboland. I know many of you have been in limbo far longer, and gone through much more than I have.
My extended family is pressuring me to travel to a place like the Mayo Clinic, where I can see a variety of specialists who will work closely together to figure me out. From everything I've heard on MedHelp and other places in the blogosphere, I don't want to go to Mayo.
But where do I go? Where else has an organized program for out-of-town patients, that can schedule me to see any/everyone they want me to see, have all the tests run, etc., in a week or so?
I'd love some advice and/or feedback! Thanks!
My extended family is pressuring me to travel to a place like the Mayo Clinic, where I can see a variety of specialists who will work closely together to figure me out. From everything I've heard on MedHelp and other places in the blogosphere, I don't want to go to Mayo.
But where do I go? Where else has an organized program for out-of-town patients, that can schedule me to see any/everyone they want me to see, have all the tests run, etc., in a week or so?
I'd love some advice and/or feedback! Thanks!
I saw this post awhile ago but didn't get a chance to reply.
When I was undiagnosed, I was getting nowhere fast with small practice specialists, so I did make the decision to go to a major university hospital for an evaluation. I was hoping that I would get more attention and that they would not be so willing to settle for non-answers.
I brought all of my test reports with me, and my MRI films and CD, etc. I had an appt with a neurologist who also sent me over to see a rheumatologist that same day. Between the two of them, I had 12 vials of bloodwork drawn and a lot of physical examination.
Sadly, in the end, this brought me no closer to a diagnosis. The neuro's suggestion to me was to repeat my MRI's every 6 months and "pray" it didn't definitively turn into MS. That was pretty much the same thing the local neuro had told me, as I had 7-8 brain lesions but a clear LP. So his advice and take on my situation was nothing new. The rheumatologist was convinced upon examining me that I was "coming down" with RA and/or lupus. However, when my ANA and RA came back negative, she had no explanation. I was pretty much placed back in the "wait and see" position in which the local docs had already placed me. That made no sense to me, by then I was too sick to work or get out of bed most days, so I felt they had to be missing something.
I will say that both of the university doctors were less dismissive than the local practice specialists that I saw. While the local docs seemed annoyed or wanting to get rid of me as a patient when I didn't fall into a neat category, the university docs were more compassionate and shared my frustrations at the lack of an obvious diagnosis. However, in the end, that was of limited value.
In the end, I got my diagnosis of Lyme disease from an integrative internal medicine doctor with a practice specializing in complex chronic illness. This was pretty much the opposite direction of big university medicine, it is a small practice that takes what I would call an alternative approach to mainstream medicine. I would not have gotten diagnosed with Lyme by a standard doctor, as my serological evidence was too weak for most doctors to consider positive.
I do think going to the university hospital was an important step for me, as it was kind of me giving mainstream medicine a "last chance." I would not have been ready to consider alternatives until I felt I had ruled out the possibility of a traditional diagnosis from a traditional doctor. I'm usually a hard-core evidence-based science kind of gal, and so stumping the big U doctors is what it took for me to look further for answers, if that makes any sense.
Whatever you decide to do, good luck and hang in there.
When I was undiagnosed, I was getting nowhere fast with small practice specialists, so I did make the decision to go to a major university hospital for an evaluation. I was hoping that I would get more attention and that they would not be so willing to settle for non-answers.
I brought all of my test reports with me, and my MRI films and CD, etc. I had an appt with a neurologist who also sent me over to see a rheumatologist that same day. Between the two of them, I had 12 vials of bloodwork drawn and a lot of physical examination.
Sadly, in the end, this brought me no closer to a diagnosis. The neuro's suggestion to me was to repeat my MRI's every 6 months and "pray" it didn't definitively turn into MS. That was pretty much the same thing the local neuro had told me, as I had 7-8 brain lesions but a clear LP. So his advice and take on my situation was nothing new. The rheumatologist was convinced upon examining me that I was "coming down" with RA and/or lupus. However, when my ANA and RA came back negative, she had no explanation. I was pretty much placed back in the "wait and see" position in which the local docs had already placed me. That made no sense to me, by then I was too sick to work or get out of bed most days, so I felt they had to be missing something.
I will say that both of the university doctors were less dismissive than the local practice specialists that I saw. While the local docs seemed annoyed or wanting to get rid of me as a patient when I didn't fall into a neat category, the university docs were more compassionate and shared my frustrations at the lack of an obvious diagnosis. However, in the end, that was of limited value.
In the end, I got my diagnosis of Lyme disease from an integrative internal medicine doctor with a practice specializing in complex chronic illness. This was pretty much the opposite direction of big university medicine, it is a small practice that takes what I would call an alternative approach to mainstream medicine. I would not have gotten diagnosed with Lyme by a standard doctor, as my serological evidence was too weak for most doctors to consider positive.
I do think going to the university hospital was an important step for me, as it was kind of me giving mainstream medicine a "last chance." I would not have been ready to consider alternatives until I felt I had ruled out the possibility of a traditional diagnosis from a traditional doctor. I'm usually a hard-core evidence-based science kind of gal, and so stumping the big U doctors is what it took for me to look further for answers, if that makes any sense.
Whatever you decide to do, good luck and hang in there.
Patients have more power than they used to. Patients are supposed to be able to be a part of the treatment team, making diagnosis and treatment decisions.
There are legal implications for doctors who 'Fail to Treat', and 'Fail to Diagnose in a Timely Manner'. There are doctors who are misogynistic, lazy, misinformed and just plain mean. Doctors are acutally taught to NOT trust their patients, to think that patients are not being truthful in some way. So they take our words very lightly. They often feel like they have to pratice 'defensive medicine', ordering more tests than is needed to make a diagsnosis becuase they are afraid of a lawsuit.
Then, doctors don't like to step on the toes of other physicians. They will almost always take the word of another doctor over your word. They will order the same tests as other doctors and will stand up for their 'friends' doctors.
Beware of doctors who have their own practice without other doctors in the clinic/office. Doctors that do this do not play well with others. They also don't continue to learn and update their knowledge base becuase there is no competition to motivate them.
There are also wonderful doctors out there who care very much for their patients. Who do really spend time with a patient to figure things out.
Working with a teaching hospital has been the best for me. You often get alot of heads together both doctors and students so you have a better chance at being cared for properly.
TIP: After finding a good doc. Don't mention or bring up the bad doc., if they want records--take the release forms home and don't fill them out until your new doctor has had time to get to know you.
Obtain your own records. Demand that corrections be made. Let the doctors know that they have; failed to treat, failed to diagnose in a timely manner. Ask for a letter from them stating whatever they have told you--like 'does not have MS, does not have epilepsy, does not have a neurological disorder.
I have done these things and it's very interesting.
So, ask the doctor to put the Somatic Disorder statement in a letter form with his signature. I can assure you he will freak out.
Patient knowledg and power is a very good thing!
There are legal implications for doctors who 'Fail to Treat', and 'Fail to Diagnose in a Timely Manner'. There are doctors who are misogynistic, lazy, misinformed and just plain mean. Doctors are acutally taught to NOT trust their patients, to think that patients are not being truthful in some way. So they take our words very lightly. They often feel like they have to pratice 'defensive medicine', ordering more tests than is needed to make a diagsnosis becuase they are afraid of a lawsuit.
Then, doctors don't like to step on the toes of other physicians. They will almost always take the word of another doctor over your word. They will order the same tests as other doctors and will stand up for their 'friends' doctors.
Beware of doctors who have their own practice without other doctors in the clinic/office. Doctors that do this do not play well with others. They also don't continue to learn and update their knowledge base becuase there is no competition to motivate them.
There are also wonderful doctors out there who care very much for their patients. Who do really spend time with a patient to figure things out.
Working with a teaching hospital has been the best for me. You often get alot of heads together both doctors and students so you have a better chance at being cared for properly.
TIP: After finding a good doc. Don't mention or bring up the bad doc., if they want records--take the release forms home and don't fill them out until your new doctor has had time to get to know you.
Obtain your own records. Demand that corrections be made. Let the doctors know that they have; failed to treat, failed to diagnose in a timely manner. Ask for a letter from them stating whatever they have told you--like 'does not have MS, does not have epilepsy, does not have a neurological disorder.
I have done these things and it's very interesting.
So, ask the doctor to put the Somatic Disorder statement in a letter form with his signature. I can assure you he will freak out.
Patient knowledg and power is a very good thing!
Hi SickMomma,
I have the same questions that you do, how to find that team of experts that actually read your files, talk things over, think about you and just you for a period of time to put the pieces of the puzzle together, a team that will treat you, actually treat you, as a whole person. I wish I had an answer for you and after 3 years, I'm sure you *really* want an answer for yourself.
All I can really say is don't do it the way I did. Mine is a cautionary tale:
My neuro suggested that I go for a more complete work-up at a university hospital. It was so soon after my hospitalization that I just wasn't capable of more complex thought, and I left the decision as to where/whom in the hands of fate pretty much. My husband and the neuro selected two university systems with neuro specialties within a few hours of where we live and sent off my files. One of them still has never responded. We went with the first and only responder. After going to the first appointment, I was sure this wasn't the doctor or system for me. University of Texas Southwest only specializes in epileptic seizures. When I tried to tell UTSW neuro that I suspected these are not epileptic seizures, but somehow related to an undiagnosed autoimmune disorder, he replied that I probably know more about autoimmune illnesses than he does. Looking back now with both hindsight and a brain that is recovering, I think he had made up his mind that he would diagnose Non Epileptic Seizures (ie Somatoform diagnosis) before their testing was done. (I didn't know anything about the disk problems in my neck and back at that point.)
I told my local neuro that I didn't think this was the right path for me, that I didn't think these were in fact epileptic seizures, and the UT doc had outright said he didn't think that these episodes of whatever were epileptic seizures, that the test was going to be too expensive using up my insurance benefits. She concurred until I reported another, though not life threatening "episode" where I lost time during the hour and a half event. (It felt like 5 minutes or less.) At that point she said I should have the test. True, I had a "team" of doctors looking at me and my case once I was there for the 24 hours a day Video EEG, but the team consisted of Mr. Next-to-Lifeless-Personality and two residents.
Where is House and his team when you need them? I would prefer House's overt cynicism and sarcasm to the barely veiled contempt I found in Next-to-Lifeless.
I still didn't understand that when the test was over, if I hadn't had a seizure, they were done with me, until the day I left and he said they would be glad to see me again, put me back through the process if I had more substantial seizures that they could evaluate. So, I spent a lot of money, energy, and time to provide fuel for the Neuro Psychiatrist to really muddy the diagnostic waters. Another mistake on my part really, I completely relied on my neuro to send me to a "really good" neuro psych to help me recover from the cognitive effects I was still experiencing. I never checked him out in any way.
There is a moral to my story/rant. If I had this to do over again, I would be much more careful in selecting my doctors. Exactly how, I don't know. Perhaps I would ask how often they diagnose Somatoform or Conversion disorder and how many of those were female. I would surely put in some time doing research. I've done some searching on "How to find a good doctor" online and mostly I come up with the suggestions to check with the AMA, State Licensing Agencies, and Board Certification boards. You used to be able to get info on lawsuits against doctors for free, but I think now these are pay services. I'm also interested in knowing if others have worked out this issue of how to find the right doc.
SickMomma, I feel for you. I'm so sorry it is taking so very long for you to get answers and help. If you find the answer, partial or otherwise, to finding that special group of specialist, I'd love to hear about it.
warmest regards,
--faithHGL
I have the same questions that you do, how to find that team of experts that actually read your files, talk things over, think about you and just you for a period of time to put the pieces of the puzzle together, a team that will treat you, actually treat you, as a whole person. I wish I had an answer for you and after 3 years, I'm sure you *really* want an answer for yourself.
All I can really say is don't do it the way I did. Mine is a cautionary tale:
My neuro suggested that I go for a more complete work-up at a university hospital. It was so soon after my hospitalization that I just wasn't capable of more complex thought, and I left the decision as to where/whom in the hands of fate pretty much. My husband and the neuro selected two university systems with neuro specialties within a few hours of where we live and sent off my files. One of them still has never responded. We went with the first and only responder. After going to the first appointment, I was sure this wasn't the doctor or system for me. University of Texas Southwest only specializes in epileptic seizures. When I tried to tell UTSW neuro that I suspected these are not epileptic seizures, but somehow related to an undiagnosed autoimmune disorder, he replied that I probably know more about autoimmune illnesses than he does. Looking back now with both hindsight and a brain that is recovering, I think he had made up his mind that he would diagnose Non Epileptic Seizures (ie Somatoform diagnosis) before their testing was done. (I didn't know anything about the disk problems in my neck and back at that point.)
I told my local neuro that I didn't think this was the right path for me, that I didn't think these were in fact epileptic seizures, and the UT doc had outright said he didn't think that these episodes of whatever were epileptic seizures, that the test was going to be too expensive using up my insurance benefits. She concurred until I reported another, though not life threatening "episode" where I lost time during the hour and a half event. (It felt like 5 minutes or less.) At that point she said I should have the test. True, I had a "team" of doctors looking at me and my case once I was there for the 24 hours a day Video EEG, but the team consisted of Mr. Next-to-Lifeless-Personality and two residents.
Where is House and his team when you need them? I would prefer House's overt cynicism and sarcasm to the barely veiled contempt I found in Next-to-Lifeless.
I still didn't understand that when the test was over, if I hadn't had a seizure, they were done with me, until the day I left and he said they would be glad to see me again, put me back through the process if I had more substantial seizures that they could evaluate. So, I spent a lot of money, energy, and time to provide fuel for the Neuro Psychiatrist to really muddy the diagnostic waters. Another mistake on my part really, I completely relied on my neuro to send me to a "really good" neuro psych to help me recover from the cognitive effects I was still experiencing. I never checked him out in any way.
There is a moral to my story/rant. If I had this to do over again, I would be much more careful in selecting my doctors. Exactly how, I don't know. Perhaps I would ask how often they diagnose Somatoform or Conversion disorder and how many of those were female. I would surely put in some time doing research. I've done some searching on "How to find a good doctor" online and mostly I come up with the suggestions to check with the AMA, State Licensing Agencies, and Board Certification boards. You used to be able to get info on lawsuits against doctors for free, but I think now these are pay services. I'm also interested in knowing if others have worked out this issue of how to find the right doc.
SickMomma, I feel for you. I'm so sorry it is taking so very long for you to get answers and help. If you find the answer, partial or otherwise, to finding that special group of specialist, I'd love to hear about it.
warmest regards,
--faithHGL
Thanks, Jibs!
Sorry you've recently had an anniversary too. Sadly, I know some folks have been in limbo far longer than I have. :-(
Anyone have any experiences, good or bad, that they can share with me?
Sorry you've recently had an anniversary too. Sadly, I know some folks have been in limbo far longer than I have. :-(
Anyone have any experiences, good or bad, that they can share with me?
OMG...3? i just turned 1 (hhahaha) in limbo...I wish i could help but may I suggest researching on the internet...You know what is funny..I am not far from Boston yet have not gone...Boston has some really amazing facilities , so I hear...I guess I am figuring my neuro is still working on things but I get so frustrated sometimes with the process...
I hope someone else comes along with an idea....
Jibs
I hope someone else comes along with an idea....
Jibs
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