@Monacyte As a med student myself I thought this as well, however, after residency you will learn that most primary care physicians or physicians in other fields don't much about a lot of areas in Neurology. Even something as common as stroke is not treated correctly by a good number of neurologists let alone primary care physicians.
If I jiggle my leg(s) when dealing with a math problem or after sitting for a long time, could this be some sort of dystonia? I catch myself doing this a lot of times, but it seems to be some sort of relieve, I even do it intentionally. I would rather think this has to do more with muscle tone, but could it be actually dystonia?
@borkoboyanov This could be a habit or restless legs. Do you move your legs in bed? Do your legs keep you up at night? Or is this only when you are mentally preoccupied during the day?
I , too, have felt your "pain"....I have spasmodic dysphonia and now have developed cervical dystonia. I went through many doctors trying to find help and got every dx from acid reflux to anxiety. It wasn't until a speech therapist asked me if any dr. ever mention spasmodic dysphonia. I had never heard of it so she recommended a specialist and finally after 2 years of searching....I am with the right doctor. I am getting Botox injections and it has been a life saver for me! Thx for sharing.
@Monacyte You're right. I totally agree that the doctor(s) should have made a correct diagnosis. However, I still stand by my belief that patients ought to be knowledgeable about their conditions, particularly chronic ones. Researching one's own diagnosis is not "wrong". It's smart. While doctors most certainly bear the ethical responsibility of diagnosing properly (and researching when necessary), patient's shouldn't just blindly trust from a position of total ignorance. Knowledge is power.
@rmcdaniel423 I am a Neurologists and I don't believe I would be able to diagnosis AML or ALL, so I would send that to a Hematologist. As physicians you know what you are trained in and should have a good foundation on common disorders on other fields. Movement Disorders is a sub-specialized field where other physicians will know less about. Even general neurologists misdiagnosis Parkinson's disease when it is a look a like.
@ROME06MD I'm confused by the intent of your reply. Are you correcting me, or agreeing with me? Your comment speaks of the need for clinicians to know their limits and refer out judiciously. I agree 100% with you. My comments were about the wisdom of patients doing their own research about the chronic conditions they deal with, regardless of their doctor's accuracy of diagnosis. Whether one has a brilliant doc or an ignorant one, I think a patient ought to try to be informed. Is that wrong?
hi,just listened to your story and omg its like listening to eveything I went thru!! It took so long to get a diagnosis and once I did it was such a relief, I wasnt goin mad...Thought I was going crazy and nobody able to understand just exactly how I felt and what I was going thru..been diagnosed 5 years now and like you I have the injections which make life pretty much normal for me now, they are a godsend. Thanks so much for sharin your exp, it truly is like hearing myself
I am a pre-med student who will be entering a graduate Physician Assistant program next fall. I have come to the conclusion that patients ought to become experts in their own particular conditions because even though doctors know LOTS of medical info, they can't be experts in everything. You really need to be your own best advocate. This guy is a perfect example of that. As a future practitioner, I would like to thank you for sharing this.
Enlightening video,much the same myself really noticed it when driving,you know when you have to look behind,Yep really impossible,full body turning just to reverse?The bit about sitting straight rings a bell as well.Excellent,recommended video for anyone who feels problems with their neck,could be cervical dystonia.Remembering though when speaking about tense neck,literally means you can see and feel the muscle on one side tense constantly, incase anyone gets the wrong idea about cerv/dystonia
oh darlin, I too suffer from Cervical Dystonia...it sucks ass...but know you do not suffer alone! Wonderful, honest video.. Your story sounds EXACTLY like mine. Had to subscribe! Hang in there, my friend. I'ma be getting the Deep Brain Stim surgery in Dec. and it's been YEARS of bad docs telling me stupid shiat to get to this point.
This is a wonderful video. It is great to hear you are feeling better physically and mentally as well. My wife has been suffering from similar symptoms for a year and half. No doctor has been able to diagnose her with dystonia but from her reading she has now decided it is a dystonia. She now desperately needs a specialist to comfirm her condition and probably start treatment of some kind. We currently live in finland and it would be difficult to get in touch with the doctor you mentioned.
@Monacyte As a med student myself I thought this as well, however, after residency you will learn that most primary care physicians or physicians in other fields don't much about a lot of areas in Neurology. Even something as common as stroke is not treated correctly by a good number of neurologists let alone primary care physicians.
ROME06MD 10 months ago
If I jiggle my leg(s) when dealing with a math problem or after sitting for a long time, could this be some sort of dystonia? I catch myself doing this a lot of times, but it seems to be some sort of relieve, I even do it intentionally. I would rather think this has to do more with muscle tone, but could it be actually dystonia?
borkoboyanov 11 months ago
@borkoboyanov This could be a habit or restless legs. Do you move your legs in bed? Do your legs keep you up at night? Or is this only when you are mentally preoccupied during the day?
ROME06MD 10 months ago
I , too, have felt your "pain"....I have spasmodic dysphonia and now have developed cervical dystonia. I went through many doctors trying to find help and got every dx from acid reflux to anxiety. It wasn't until a speech therapist asked me if any dr. ever mention spasmodic dysphonia. I had never heard of it so she recommended a specialist and finally after 2 years of searching....I am with the right doctor. I am getting Botox injections and it has been a life saver for me! Thx for sharing.
ALDL940 1 year ago
@ALDL940 Great!!! I'm glad to hear it.
ROME06MD 10 months ago
@Monacyte You're right. I totally agree that the doctor(s) should have made a correct diagnosis. However, I still stand by my belief that patients ought to be knowledgeable about their conditions, particularly chronic ones. Researching one's own diagnosis is not "wrong". It's smart. While doctors most certainly bear the ethical responsibility of diagnosing properly (and researching when necessary), patient's shouldn't just blindly trust from a position of total ignorance. Knowledge is power.
rmcdaniel423 1 year ago
@rmcdaniel423 I am a Neurologists and I don't believe I would be able to diagnosis AML or ALL, so I would send that to a Hematologist. As physicians you know what you are trained in and should have a good foundation on common disorders on other fields. Movement Disorders is a sub-specialized field where other physicians will know less about. Even general neurologists misdiagnosis Parkinson's disease when it is a look a like.
ROME06MD 10 months ago
@ROME06MD I'm confused by the intent of your reply. Are you correcting me, or agreeing with me? Your comment speaks of the need for clinicians to know their limits and refer out judiciously. I agree 100% with you. My comments were about the wisdom of patients doing their own research about the chronic conditions they deal with, regardless of their doctor's accuracy of diagnosis. Whether one has a brilliant doc or an ignorant one, I think a patient ought to try to be informed. Is that wrong?
rmcdaniel423 10 months ago
hi,just listened to your story and omg its like listening to eveything I went thru!! It took so long to get a diagnosis and once I did it was such a relief, I wasnt goin mad...Thought I was going crazy and nobody able to understand just exactly how I felt and what I was going thru..been diagnosed 5 years now and like you I have the injections which make life pretty much normal for me now, they are a godsend. Thanks so much for sharin your exp, it truly is like hearing myself
myself.
suzanne19651 1 year ago
@suzanne19651 These stories should be shared with the National Spasmodic Torticollis Association
ROME06MD 10 months ago
I am a pre-med student who will be entering a graduate Physician Assistant program next fall. I have come to the conclusion that patients ought to become experts in their own particular conditions because even though doctors know LOTS of medical info, they can't be experts in everything. You really need to be your own best advocate. This guy is a perfect example of that. As a future practitioner, I would like to thank you for sharing this.
rmcdaniel423 1 year ago
Enlightening video,much the same myself really noticed it when driving,you know when you have to look behind,Yep really impossible,full body turning just to reverse?The bit about sitting straight rings a bell as well.Excellent,recommended video for anyone who feels problems with their neck,could be cervical dystonia.Remembering though when speaking about tense neck,literally means you can see and feel the muscle on one side tense constantly, incase anyone gets the wrong idea about cerv/dystonia
gringoboy9 1 year ago
oh darlin, I too suffer from Cervical Dystonia...it sucks ass...but know you do not suffer alone! Wonderful, honest video.. Your story sounds EXACTLY like mine. Had to subscribe! Hang in there, my friend. I'ma be getting the Deep Brain Stim surgery in Dec. and it's been YEARS of bad docs telling me stupid shiat to get to this point.
xoxoxo
-Jess
MadMadamJess 1 year ago
Can you give us the full name of the doctor with a phone number ? can you also give us some more advice on what we can do ?
dahabfin 1 year ago
This is a wonderful video. It is great to hear you are feeling better physically and mentally as well. My wife has been suffering from similar symptoms for a year and half. No doctor has been able to diagnose her with dystonia but from her reading she has now decided it is a dystonia. She now desperately needs a specialist to comfirm her condition and probably start treatment of some kind. We currently live in finland and it would be difficult to get in touch with the doctor you mentioned.
dahabfin 1 year ago