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Functional neurological disorder

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Old 05-15-2015, 09:20 AM   #1
waterwillow
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Default Functional neurological disorder

Functional Neurological Disorder has been given many names over the years including the archaic Conversion Disorder,
Functional Movement Disorder
Dissociactive Seizures,
Hypochondrias-is
Malingering,
Psychosomatic,
Psychogenic
Abnormal Illness Behaviour, GOES ON AND ON AND ON AND ON

I have been diagnosed with Functional Neurological Disorder which seems to account for most of us who have movement disorders/seizures that do not fit into any known medical pigeon hole.

I attend a Neuro Psychologist who is trying to raise the awareness of this dreadfully debilitating condition and who also wants Neurologists and medical practitioners to understand that the symptoms can overwhelm the patient and destroy lives, familes and careers. Just as mush as Parkinsons or Multiple Sclerosis

Accepting that this condition relates to me and have nothing organic found to account for my symptoms which include, constipation, poor walking gait, cramps in calves, double vision, depression and mood swings and yes yes yes fatigue. has been the most difficult thing I have ever had to do.

A consultant in Edinburgh, Scotland, Jon Stone is working hard doing research and trying to educate Neurologists in particular that the 20% of people who come into their consultation room with unexplainable movements etc are not making it up, feeling sorry for themselves or looking to achieve some manipulation of their life/ environment/ relationships.

So remember anyone who reads this, if you get a diagnosis of FND it is real and you can hold your head up high. It may not be understood how we develope this disorder but it is certainly very real. YOU ARE NOT MAD. Tell people what you have and lets try to get further research into this and related conditions.
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Old 05-15-2015, 01:36 PM   #2
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Thanks for this waterwillow.
It's encouraging to read that someone here has found not just a good doctor but by the sounds of it an excellent one. It's also good to hear there are a few medical professionals that are taking these obscure conditions seriously.

I have my first neurology appt. in 5 days time and I will keep your words in mind to stay positive. Not that I have high hopes - from previous experiences with the medical profession I've learned to keep my expectations low.

Thank you for sharing.
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Old 05-16-2015, 08:07 AM   #3
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Quote:
Originally Posted by bluesfan View Post
Thanks for this waterwillow.
It's encouraging to read that someone here has found not just a good doctor but by the sounds of it an excellent one. It's also good to hear there are a few medical professionals that are taking these obscure conditions seriously.

I have my first neurology appt. in 5 days time and I will keep your words in mind to stay positive. Not that I have high hopes - from previous experiences with the medical profession I've learned to keep my expectations low.

Thank you for sharing.
Hi Bluesfan. Your second sentence is exactly the issue I would love to shout from the rooftops. THESE ARE NOT OBSCURE CONDITIONS 20% or 1 in every five people that attend neurology do not have a recognisable organic change (or should I say one that is they can put their finger on.

That is why I wanted awareness raised. Took years before I finally accepted a Functional diagnosis. My drunken walk down the street with neighbours constantly asking if I had Parkinsons, a stroke, MS etc was so embarrassing I stayed in. A FUNCTIONAL diagnosis is equally as relevant and gives hope as a functional condition can at times improve. Not always but is better than a condition that nothing can be done.

We just need treated as seriously as any other patient, as I say the condition is VERY REAL. Not just in your head. My group who meet with my neuropsychologist include people who

Spontaneously drop to the floor.
Have non epileptic siezures
Shake uncontrollably to the point they are dependent on a carer to wash/dress and meet all their needs. But this person has a wonderful nature and is articulate on how they feel.
Take weakness fits that can last for days and require a wheelchair during this time.

FUNCTIONAL CONDITIONS NEED TO HAVE MUCH MORE RECOGNITION AND NOT IGNORED.

Good luck for your appointment, neurologists are not all bad but they dont have all the answers either. LOL
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Old 05-17-2015, 10:00 AM   #4
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Thanks for this.

It seems that I shall be getting a diagnosis of FND when I see my Neuro on June 1. Nice to know that I am not the only one.
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Old 05-17-2015, 03:21 PM   #5
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Thanks but its hard to take being pushed from pillar to post and doctors not agreeing. You feel like an old piece of meat lol
Good luck and I would be interested to know how you get on.
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Old 05-26-2015, 03:47 PM   #6
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Hello to all,

Those with Functional Neurological Disorder may find this website helpful:
http://www.fndhope.org/
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Old 10-03-2015, 04:50 PM   #7
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Default Any Suggestions for FND?

Have you found any suggestions that can help with FND? What is the prognosis?
Thanks.
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Old 10-04-2015, 04:47 PM   #8
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Originally Posted by LongRoad View Post
Have you found any suggestions that can help with FND? What is the prognosis?
Thanks.
There is another site that gives more information.
http://www.neurosymptoms.org/

I am part of a working group of patients trying to work through the condition together and share our insights. The main difficulty being the fact that most neurologists and practitioners have no idea of the underlying causes.

However we have all improved be it to a greater or lesser extent. The main fact which has been common to us all is the "acceptance of the condition". Until this is done the individual hunts for alternative illnesses, chases endless tests, thinks they are mad and can become depressed or psychologically drained.

Once accepted you can try to work through just what is happening. Many of us seem to have had a "difficult past". Whether this has made us hyper sensitive well who knows. The thing to remember is that the condition is real, it can improve but we need to try hard to maintain as normal a lifestyle as possible. Easy to say, it certainly is not easy to do.

If we say we have Parkinson's or MS no one questions it, we are almost made to feel we are making it up. The social and often physical impact of this condition is equal to either.

What helps? I can say that for me Tai Chi and Qi Gong help my muscle movements. I meditate to try to calm my thoughts which used to run away with me. I was convinced I had all manner of ailments. Luckily I do not have the collapses/seizures that many do. For them having some form of external focus helps. Like having a small item in the pocket that they can take out and squeeze in the hand when the attack is felt building inside.

Then there are the general things that help us all. Exercise, good diet, keeping social contact, avoiding excess.

Do not expect things to change overnight but rather stabilising the situation first. It may take the help of some medication to combat the pains, bowel and bladder difficulties and yes the fatigue and depression. Then small baby steps to get the most from life.

I wish I had all the answers but this condition, from a medical point of view is in the early stages of recognition.

I wish you well.
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Old 10-05-2015, 01:32 PM   #9
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Default Thanks - FND/NES/CD

Hello WaterWillow,

I thank you sincerely for taking your time to write a thoughtful and encouraging reply. I think it is the enormous lack of information and support from the medical community that is as difficult to comprehend, as the condition itself. I have not yet met a medical professional who truly understands the condition, and surely they have not provided any meaningful assistance. Rather, the quick answer is, "it's psychological stemming from a past emotional trauma - you need a mental health person". Yet, they can't identify/explain any basis for their claim, no evidence of their conclusions, but are still content to firmly document such diagnosis all over one's medical records and leave the person on one's own to deal with the very real symptoms. The doctors seem so comfortable dismissing any professional responsibilities to help, that it is disturbing. They run several expensive tests/labs and charge for the highest level of consult, and then turn you away! If I were diagnosed with cancer, and yet left on my own by the doctors to treat myself, it would be called "medical neglect", but somehow not with this condition. I live in a large metropolitan city in the USA, but yet there is not even one medical professional that has any real knowledge or training about this condition. They can't explain more than a simple paragraph that anyone can read on the Internet. I do not know anyone with this condition, nor anyone who understands the struggles of this condition. Instead, I feel very misjudged and alone, with no answers, no support, and don't know what to do next.

I do not have a "past trauma". There are a lot of people who have enormous stress each day, and yet do NOT develop these symptoms. There response/coping skills are certainly not any better, so why do they not have this condition? Can it really be chalked up to "emotional stress"??

I believe stress can surely aggravate the symptoms, but, I believe, that is after there is already organic, physiological mechanisms in place that are malfunctioning, whether it is the derailing of messages among the neurons within the autonomic/CNS system or present damage to the neurons, or an imbalance of specific chemicals at the wrong times. It is "not" solely psychological, but rather a concert of physical with the psychological. Could possibly the physical be explained by things that cause damage to the body that mega-corporations prohibit from being accurately researched - artificial sweeteners, mercury poisoning (amalgam fillings), cell phone/computer emissions, food pesticides, sick buildings, medications, etc. My seizures began after I began taking a prescribed medication for my blood pressure, called Methyldopa. The seizures (3 to 4+ hours) began out-of-the blue and severe, like a big bang! All four limbs jerked wildly, non-stop. When I told my doctor about this, he "immediately" had me slowly withdraw from the medication and then DISMISSED (via phone call) me as patient! Wow...

Like me, it seems people, of different ages, battle this condition for "many" years. Of all my reading, I have not read about one person who has completely overcome it, yet stress levels change with life stages/situations. Therefore, how is this condition fully explained, if it were simply only psychological? Everyone talks about how little information and help is available, no matter what country in which they are located. I live in one of the largest cities in the USA and there is no help, not even a support group, and not one person whom I know that has this condition.

Each day, as a parent, I push through with my responsibilities, with frequent interruptions of annoying and exhausting symptoms. The symptoms are severe enough to stop me from whatever I am doing at the moment. Once another seizure and slurred speech passes, I keep going again, but how can I live life like this, for the next limitless number of years??

I also struggle just as hard each day with extreme blood pressure surges and falls within seconds (e.g., 230/195, 48/35), and have for the past 11 years. (I've been to every specialist possible, and gave them ten's of thousands of money out of my pocket.) The blood pressure extremes are random, but daily. The surges can be from stressful situations, to simply laughing and talking with a friend; the falls are usually due to positional changes (sitting/lying to standing). It's as if the mechanisms (baroreceptors) that balance the blood pressure fail to work. Pheochromocytoma has been ruled out many times. I was diagnosed with POTS, but also Baroreceptor Reflex Failure, which has left me very confused. Would you be so kind as to ask the members of your group if anyone knows of blood pressure involvement with FND/NES/CD/etc.? Again, your time and efforts are sincerely appreciated. The symptoms are not easy to live with... Thank you.
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Old 10-06-2015, 07:52 PM   #10
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Hi, I've had tremors for 16 years. They always appear after I'm thinking because having a psychiatric illness I think too much and get too stressed. I have a question, does it reduce life expectancy? I've learned to think less so now tremors are less frequent. However if I put a paper on my hand I notice a small tremor,so I guess some tremor is now present 24/7 inside my body. Thanks.
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