I, too, copied some notes from other online forums to give to my doctor to help him better understand me. I doubt that they were read, but I don't know for sure. The online forums such as this have been the most helpful to me . . . just to know that I am not alone.
No, I didn't say anything. He saw the EMG results, because when I called to get them, his receptionist said he'd called them vague and nonspecific, but he was willing to meet with me anyway. That told me there was no way he'd ever be willing to admit a wrong or change his mind, so I just made my follow up appointment with the doctor who'd run the test. They're at the same practice.
A muscle biopsy just came back with small abnormalities (the kind normal muscles sometimes show but that could indicate a problem), and my neuro is unavailable for a long time, so my appointment to discuss the results is with someone else. I'm pretty nervous about that; my experiences with neuros have left me a little gun shy.
Part of the problem is that I can do anything just about once. I mean, I can walk just fine for five or ten steps across an office. Send me to the mall to buy a birthday gift, though, and I'm a twisted mess long before I get home, and I'll be stiff for days. Daily tasks have become almost unbearable.
My immediate family sees it, which is a great blessing in itself. I've read so many horror stories about unsupportive spouses and such.
One thing I'd like to bring up at my appointment is Isaacs Syndrome (neuromyotonia). The symptoms describe me so well.
If anyone is curious about it, a quick Google search will bring up the NINDS site, and I've posted a link to a really helpful Proboards resource in the links thread.
The only thing it doesn't explain is the cognitive issues and aphasia I sometimes have - but I'm really thinking now that that's just sleep deprivations, since I never get more than five hours of sleep a night, and that's restless.
I guess the pain does that to most of us. Makes it hard to distinguish the symptoms of our symptoms from the symptoms of our disorders, though, doesn't it?
How horrible!! What a jerk!!! I hope you can either go see him or send a message to him of how wrong he was. Did he get a copy of the results of both tests I hope? Don't ya just want to go back and shove it in his face?
As far as who the new neuro is-----You go Girlfriend!
For the most part, I've simply been brushed off by doctors or had them shrug, but one neurologist I saw several months ago told me flat-out that my symptoms were caused by anxiety, I need a neuropsychicatric exam, and that he could order an EMG but "it would be negative."
He had interrupted every question he had asked me by supplying his own extended answer of what he THOUGHT I was saying. Of course he was only going to support his own pre-set theory!
He also told me, when I pointed out that he hadn't even bothered to read through the timeline of symptoms I'd brought, that "it would take all day."
Maybe that's why I need a doctor, jerk!
I said I would take both the neuropsych and the EMG, please.
The neuropsych showed no signs of anxiety.
The EMG showed abnormalities, and though they were nonspecific, the neurologist administering the test said my problem was definitely real and definitely physical.
She's my new neuro.
I also made a habit of getting all of the chart notes from doctors/specialists to make sure the impression they gave me matched what they put in my file.
Hi Faith, Your question piqued my interest because I have been afraid that someone might say that to me. No one including doctors have even insinuated anything like this but still I worry about it----even with the positive tests that I do have. It is interesting to note that primarily women are branded with these stupid diagnoses.
Here is some info for those who don't know about these disorders:
Somataform Disorders is the umbrella that these 'disoders' fall under
Conversion disorder is a physiologic response to a stressor or trauma. The response appears to be neurological and manifests as things like sudden complete paralysis, inability to walk, numbing of various body parts that don't follow the 'normal' outline of the neuro system. It is very real and not a 'feigned' illness. An author of a book called Betrayal of Innocence suddenly became paralyzed from the waist down while on an airplane with friends. Without going into details, she had ignored/suppressed the fact that she had been sexually molested throughout her childhood. She wasn't 'faking' her paralysis it was real. She recovered fully.
Malingering is where the person purposely 'feigns' a disorder for primary gain. Primary gain is where the person wants to avoid something negative. Criminals will often try to fake a mental illness in order to avoid prosecution.
Factitous Disorder is similar to Malingering but with the purpose of receiving 'secondary gain' from doctors, family and friends. People try to make themselves sick so that they will get the attention/sympathy they feel they need. Munchausen is a good example of this. People have been known to put blood in a urine sample to make it look like they are seriously ill.
Only a psychiatrist can diagnose these!!!!
Somatorm Disease is predominately women under 30 with at least 2 gastro complaints, 1 sexual problem, pain in at least 4 sites and at least one neuro symptom. Typically, these ailments cannot be found with testing.
These are all 'nice' ways of saying you are a hypochondriac and are not sick. Actual diagnoses of these illnesses are rare and almost always women. When doctors can't diagnose or don't want to be bothered they will say your symptoms are psychological.
If a doctor ever says this to you, let him know that his inability to diagnose is not a negative reflection on you. They high-tail it to a real doctor.:-)
I ultimately found the root cause of my illness, but I spent over a year in Limbo and seeing a lot of doctors and getting a lot of tests.
In my experience, some doctors are quick to jump to an emotional or psychological explanation when they fail to diagnose a patient. And of course, having your life interrupted by a mystery ailment can cause a huge amount of stress and over negative emotions, so it's almost a self-fulfilling situation.
When I was told "stress" by my first neuro, and offered sample bottles of some antidepressant, I told him that if I did have a psychological disorder, I would prefer it to be diagnosed and treated by an expert in that field. I did consult with both a psychiatrist and a therapist, and both hands-down felt I needed to pursue a physically-based diagnosis.
I'm not sure such validation helped much with my future interactions with other doctors, but it helped me feel more confident.
In general, I think that anything you can do to demonstrate your commitment to your health can help while seeking a diagnosis. In addition to consulting mental health specialists to rule out a psychological problem, I also quit smoking, started exercising (which I was able to do at the time), eliminated artificial sweeteners and most processed food from my diet, lost weight, and so on.
Funny though, the one habit that I could not kick was my coffee, and some doctors would jump on that as a possible source of symptoms. But it at least gave me some "power" back in the situation to take what control I could over my health.
So, if you feel that you're getting a psych diagnosis as a brush off, I would suggest to follow up on it and to get evaluated by an appropriate mental heal professional. Having a professional opinion on the matter is more effective than anything you can say to a doctor to convince them that your illness is organic and not mental.
Just my thoughts and experience, your mileage may vary.