Functional neurological disorder diag... - Functional Neurol...
Functional neurological disorder diagnosed without any tests??? Can anyone advise if this can be diagnosed from just a physical examination?
I forgot to add I was diagnosed with neurogenic bladder two weeks ago!
It depends on your symptoms. If you have symptoms very characteristic of, say, a stroke and do not have any pathological signs of stroke (such as pathological reflexes on the weak side, or Babinski sign), the doctors can diagnose you with FND without testing. There are also some positive signs for FND, such as Hoover's sign or weakness of some neck muscle (forgot the name) which should not be present in the stroke. BUT it does not mean you should believe the doctors just because they say so.
Kotovasv is right. If you are not sure then ask your doctor how he arrived at the FND diagnosis. The diagnosis should not be made from negative test results, but from positive physical findings.
I have had all urology examinations including ultrasound,cystoscopy with biopsy and urodynamics test. This is how the neurogenic bladder was diagnosed. With the fnd no nerve tests whatsoever just physical tests. Showing positive babinski reflex.
What are your symptoms that your doctor has attributed to FND?
Ok here we go the neurologist said to me that this is not nerve damage,it is a disorder of the nerves. He said it was functional neurological disorder the he asked me do I accept the diagnosis??? What a question to ask! He is the professional and I am the patient. Are you telling me or asking me? Anyway have had an accident in 2009 and symptoms have been getting worse throughout the years. I have severe tremor in left leg with inability to move toes on either foot. I have painful burning feet especially at night of which I take amitriptyline. I had an mri in july 2012 of which showed l3-4 nerve root abuting the l4 nerve root. Another mri in april 2013 showed nothing. Brain normal also with mri. And obviously I have the bladder problem along with numbness to the left side of kneecap on left leg. The tremors started around 2 years ago when I had a sharp pain in left calf muscle as though I had been stabbed. As soon as I mentioned I have suffered with anxiety his stance on things seemed to change as though he had made up his mind before testing reflex etc.
sorry to hear the consultation was not more productive.......I think FND is like a holding pen for symptoms that do not fall simply into established categories......if we make a fuss we play to the psychiatric theory so many of us have to accept it.........we really need research in to this and it costs money.
Thirza
Let me begin with saying that you are far from being alone with your unhelpful experience with the doctor. In fact, all the FND patients are told this - "congratulations, you do not have any damage of your nervous system, if you accept that your problems are not organic (in other words, non-existent) you will get better". Your doctor is telling you this because this is how most neurologists are trained - that FND has psychological roots, that the first step is for patient to accept it, then the patient is referred to psychiatry and (if lucky) to a physical therapy. This is all they know and all they can offer. So, do not take his saying to your heart, he is just following the protocol. As for your symptoms - you can certainly investigate more, with other doctors and tests. But I would recommend you to keep in mind the FND possibility, anyway - in case nothing shows up at the tests, you will not be terribly disappointed. Do not think that you "fail" if you finally get diagnosed with FND - this condition is no joke, it has nothing to do with your emotional state or coping skills, it is real and may be as severely disabling as any "true" neurological disease. There are two very good websites for FND sufferers - neurosymptoms.org and fndhope.org where you can find a very useful information which should help you a lot with understanding the condition, as well as your doctor's reaction.
Too many people are believing the neurologist when he or she tells you it's all in the mind. The truth is the neurologist is not skilled enough to diagnose your real illness. I've never come across such bs in my life. The neuro would rather send you away to suffer your misery, with no help, then to get off their backsides and carry out more testing and try to establish the cause of your illness. This is a new excuse from the neurologists. How many people have died, as a result of being told they have a pyschosomatic illness? There are too many patients falling at the first hurdle. Believing the rubbish that the neuro tells. Wondering why their illness gets worse or never goes away. A close family member has dysphonia, swallowing difficulty, breathlessness and her breath shudders often. Her face is partially paralysed. She spends most of her day resting , with no social life. Yet the pathetic neuro told her he was too busy to find out what was wrong with her and then proceeded to label her pyschosomatic. We are taking her to another hospital for a second opinion and if the neuro there is of the same ilk, we intend to see yet another neurologist. We will not give up. I seen the way she suffers. I believe in her, though a lot of other family and so called friends prefer to believe the neuro.
In 2011 I developed a bizarre sensory disorder.The best description I can give is it feels like being electrocuted while all your sciatic and abdominal muscles are straining,pushing and pulling constantly back and forth as if you were compelled to ride an exercise bicycle.Even worse,it's most intense when I sit or lie down so I feel compelled to stay on my feet as much as possible.
I have no history of psychosomatic disorder or anything like that.I was a sturdy,happy go lucky guy in my mid 50's living a productive life,looking forward to a great future.
This disorder has reduced my life to ashes.I take heavy does of Neurontin and sleep as much as possible to escape the pain and maddening discomfort.I'm now six years into it - without treatment - and it's progressive. If I don't get help there's only one outcome to be naturally expected.Eventually the pain will take me down to where I simply want out,by any means necessary.
It was a full year before I was able to see a movement neurologist.I also had a lymphoma,which was discovered,and took a lot of attention that first year. But I thought - finally! I'll see a doctor and my neurological nightmare will come to an end.And while my disorder was strange I thought any neurologist would find that interesting and try to learn something from it.
What a fool I was.
He wouldn't listen to me or even look me in the face when I tried to speak to him.He just kept administering the standard "drunk driving" test for balance and so forth....three visits in a row.At the end of the third visit,with me now on the floor of his exam room,pleading with him to look at how the disorder was affecting me,he ended the session,walked me out to the patient waiting area,pumped out a referral to Pain Management from the printer and said sarcastically "I think you have a pain problem". Yet I'd never said a word about pain,of which I was experiencing little at that early stage.The inference was clear.He was calling me a liar,accusing me of wanting opiod pain killer and sending me off to Pain Management to get what he thought I wanted. He wasn't interested in my odd symptoms. He thought they indicated I was lying because he didn't know any better. [ William Severt - Beth Israel Hospital - NYC
.Thankfully he's stopped seeing patients and gone into research instead.He clearly didn't like sick people very much. ]
I threw his referral in the trash and moved on to another neurologist.But it turned out that was just the beginning of my nightmare with ignorant neurologists.
My friend,you are so right about how they behave,particularly in the hospitals.When they don't have the knowledge to diagnose an illness THEY BLAME THE PATIENT.They have fragile egos and don't like their ignorance exposed.But when it comes to FND's my hospital neurologists have been so ignorant I might as well have been talking to the cleaning lady.In six,horrific,miserable,now painful years I have yet to encounter a neurologist who knew more about these disorders than I do.
In fact,the only reason the correct diagnosis is in my record is because I flipped out in year 3 and bullied a young resident neurologist into putting it in the record.Then I accessed adult psychiatric care where they confirmed the diagnosis.But they too were bereft of solutions because it;s primarily a neurological disorder,not a psychiatric disorder like psychosomatic illnesses.
TWO THINGS I WILL SHARE WITH YOU -
1. Treatment - Try to get your family member to a Neuromodulation Center that offers Deep Transcranial Magnetic Stimulation,Vagus Nerve Therapy and other brain and nerve stimulation therapies.There's numerous therapies of this type,they are safe and have proven effective for many patients with FND's or similar neurological disorders. I am now struggling to access such therapies.
2. EMERGING TESTS - '' It Is All in Their Head: Functional MRI identifies Neural Abnormalities in Patients with Functional Movement Disorders ''
This study is leading to an fMRI test that will show images and allow grading of these disorders just as an MRI shows images and grades spinal damage etc. Do an occasional web search to keep up with the news.SOON WE'LL FINALLY BE ABLE TO PROVE TO THESE BASTARDS THAT WE'RE GOING THROUGH HELL.
God Bless and all the best of luck to your family member.
As a newbie here, let me start off by saying I'm sorry. Sounds like you have a lot going on. I think many if not all of us understand how you feel. They do find subtle markers that are associated. Negative tests help support that, but like myself I have many positive tests and some very real non specific results. It's a lot. We all get it.
The web sites I saw posted early are very good. I think educating yourself may help you understand it all....but don't hold your breath....this is a tough one to wrap your head around......but, while you are, remember you have NO control over any of this....it is your brain that controls your body. So as my not so funny neurologist recently said..." it is all in your head...since your brain is in your head, and that is what controls your body! So even if you had MS, it would still be all in your head!" Funny guy huh?
I am sure, if you are like many of us here....your trying to figure it all out. I'm still processing it all. And like many, am on the fence so to speak....
One point to remember too...is that the number one reason for a functional issue, is having an organic one. Many of us here, have very complicated medical histories...life is never simple and medicine is not an exact science. But a dance between the doctors and our bodies. We are all different and yes there are rare dieseases...I think I might have several...which is not typical according to my oncologist. Perhaps I'll print out the definition next time I see the neurologist.
That was how my other not so funny neurologist tried to explain I must believe in the diagnosis to get better....of course, I informed him that NO I do not! I only have to accept this as a working diagnosis and belief in the treatment! Which for my gait disorder is PT. I told him that I work with young children with disabilities and I do not treat Down syndrome or cerebral palsy....I treat the child's symptoms! Not the label!
Hang in there.
In 2011 I developed a bizarre sensory disorder.The best description I can give is it feels like being electrocuted while all your sciatic and abdominal muscles are straining,pushing and pulling constantly back and forth as if you were compelled to ride an exercise bicycle.Even worse,it's most intense when I sit or lie down so I feel compelled to stay on my feet as much as possible.
I have no history of psychosomatic disorder or anything like that.I was a sturdy,happy go lucky guy in my mid 50's living a productive life,looking forward to a great future.
This disorder has reduced my life to ashes.I take heavy does of Neurontin and sleep as much as possible to escape the pain and maddening discomfort.I'm now six years into it - without treatment - and it's progressive. If I don't get help there's only one outcome to be naturally expected.Eventually the pain will take me down to where I simply want out,by any means necessary.
It was a full year before I was able to see a movement neurologist.I also had a lymphoma,which was discovered,and took a lot of attention that first year. But I thought - finally! I'll see a doctor and my neurological nightmare will come to an end.And while my disorder was strange I thought any neurologist would find that interesting and try to learn something from it.
What a fool I was.
He wouldn't listen to me or even look me in the face when I tried to speak to him.He just kept administering the standard "drunk driving" test for balance and so forth....three visits in a row.At the end of the third visit,with me now on the floor of his exam room,pleading with him to look at how the disorder was affecting me,he ended the session,walked me out to the patient waiting area,pumped out a referral to Pain Management from the printer and said sarcastically "I think you have a pain problem". Yet I'd never said a word about pain,of which I was experiencing little at that early stage.The inference was clear.He was calling me a liar,accusing me of wanting opiod pain killer and sending me off to Pain Management to get what he thought I wanted. He wasn't interested in my odd symptoms. He thought they indicated I was lying because he didn't know any better. [ William Severt - Beth Israel Hospital - NYC.Thankfully he's stopped seeing patients and gone into research instead.He clearly didn't like sick people very much. ]
I threw his referral in the trash and moved on to another neurologist.But it turned out that was just the beginning of my nightmare with ignorant neurologists.
When they don't have the knowledge to diagnose an illness THEY BLAME THE PATIENT.They have fragile egos and don't like their ignorance exposed.But when it comes to FND's my hospital neurologists have been so ignorant I might as well have been talking to the cleaning lady.In six,horrific,miserable,now painful years I have yet to encounter a neurologist who knew more about these disorders than I do.
In fact,the only reason the correct diagnosis is in my record is because I flipped out in year 3 and bullied a young resident neurologist into putting it in the record.Then I accessed adult psychiatric care where they confirmed the diagnosis.But they too were bereft of solutions because it;s primarily a neurological disorder,not a psychiatric disorder like psychosomatic illnesses.
TWO THINGS I WILL SHARE WITH YOU -
1. Treatment - Try to get your family member to a Neuromodulation Center that offers Deep Transcranial Magnetic Stimulation,Vagus Nerve Therapy and other brain and nerve stimulation therapies.There's numerous therapies of this type,they are safe and have proven effective for many patients with FND's or similar neurological disorders. I am now struggling to access such therapies.
2. EMERGING TESTS - '' It Is All in Their Head: Functional MRI identifies Neural Abnormalities in Patients with Functional Movement Disorders ''
This study is leading to an fMRI test that will show images and allow grading of these disorders just as an MRI shows images and grades spinal damage etc. Do an occasional web search to keep up with the news.SOON WE'LL FINALLY BE ABLE TO PROVE TO THESE BASTARDS THAT WE'RE GOING THROUGH HELL.
God Bless and best of luck to all of you........FND MIKE NYC
I'm concerned about the neurontin. It might very well be the right thing for you, but...
I always keep an eye out for "side effects". Doctors don't. They also don't check for drug interactions either.
Anyway, a top "side effect" for neurontin is...increased seizures. Buspar was thrown at me and not only didn't it work it also...increased the shaking.
So...if it works for you, great...but...read the "side effect" list. On every med. it's eye opening...
Hugs.
