Aa
Dismissiveness
How many of us have been initially dismissed by neurologists who say our symptoms are:
Thats a new one Pseudo Dementia, makes a change from functional disorder or conversion disorder LOL.
One of my friends has terrible muscle twitching she has fibromyalgia. Every time she went to the doctor and explained about this it never happened.
Then one day she was just sat talking to my daughter and her legs become alive it was horrible twitching everywhere. So my daughter grabbed her mobile phone and videoed it.
My friend then got another appointment with the GP and took my daughter and the phone, it was this video that got her diagnosis. She was happy with fibromyalgia as it was thought that was what she had, she is bed ridden right now as she is flaring badly now she is having more tests.
Anyway could you take some sort of record of your twitching when it happens?
At least you will have PROOF its happening.
What other symptoms have you been experiencing?
MIne isnt so bad cognitively it is worse when i am stressed out but no where as bad as some people get thank god. Mine is more pain, spasms and sensory problems, fatique.
I am convinced that neurologists just think we all want to be sick. I mean yeh right 3 years ago I was earning 25,000 a year had a fabulous job, and I gave it all up to sit on my settee watching rubbish on the telly and living on 84.00 a week I.B.
I am convinced now though unless you are a text book case there is no point in even seeing a neurologist LOL, as they havent got a clue or the time to be bothered.
Life isnt like HOUSE on Hallmark who is a brilliant diagnostician and will work until he gets his patients a diagnosis, thats just sadly make believe.
In reality if your MRI are not classic then you are going on a long long journey. Goodness me I could be almost physic LOL.
Keep fighting your corner though you know there is something wrong you need answers like we all do.
Get the PROOF thats a start.
Welcome on board. Mariax
One of my friends has terrible muscle twitching she has fibromyalgia. Every time she went to the doctor and explained about this it never happened.
Then one day she was just sat talking to my daughter and her legs become alive it was horrible twitching everywhere. So my daughter grabbed her mobile phone and videoed it.
My friend then got another appointment with the GP and took my daughter and the phone, it was this video that got her diagnosis. She was happy with fibromyalgia as it was thought that was what she had, she is bed ridden right now as she is flaring badly now she is having more tests.
Anyway could you take some sort of record of your twitching when it happens?
At least you will have PROOF its happening.
What other symptoms have you been experiencing?
MIne isnt so bad cognitively it is worse when i am stressed out but no where as bad as some people get thank god. Mine is more pain, spasms and sensory problems, fatique.
I am convinced that neurologists just think we all want to be sick. I mean yeh right 3 years ago I was earning 25,000 a year had a fabulous job, and I gave it all up to sit on my settee watching rubbish on the telly and living on 84.00 a week I.B.
I am convinced now though unless you are a text book case there is no point in even seeing a neurologist LOL, as they havent got a clue or the time to be bothered.
Life isnt like HOUSE on Hallmark who is a brilliant diagnostician and will work until he gets his patients a diagnosis, thats just sadly make believe.
In reality if your MRI are not classic then you are going on a long long journey. Goodness me I could be almost physic LOL.
Keep fighting your corner though you know there is something wrong you need answers like we all do.
Get the PROOF thats a start.
Welcome on board. Mariax
The first neurologist I saw when symptoms weren't too bad back in April, simply told me there was nothing neurologically wrong with me (this was even before he'd got the results of mri he'd ordered.)
The second, four months later, told me I had some sort of depressive disorder, even though I wasn't depressed at the time of symptom onset. I was certainly depressed by this time though, due to the symptoms I was experiencing!
The third and forth last month, despite symptoms having got progressively worse, and increased in number, have both alluded to again, myself having some sort of depressive disorder, which has manifested itself in a type of 'Pseudo Dementia'. I think by now they believe I'm just making the symptoms up for the sheer fun of it.
I would of laughed if I'd of not been so gob smacked at being given such a ridiculous diagnosis, given that pseudo dementia is something the elderly develop, due to having underlying, untreated depression, not someone of 35 years of age, who was perfectly happy and content in life at symptom onset.
Even more worrying however, is that when I quizzed one of the most recent two neuro's about this diagnosis, about whether it would cause the severe muscle twitching I've been experiencing, he replied, “but no one's seen your muscle twitching”. This was despite my father who was present, telling him he'd actually witnessed it himself on numerous occasions. So that was basically a tacit admission that the condition they're proposing I have, would not cause the one of the symptoms I'm presenting. Talk about contradicting themselves!
Thankfully though, I'm getting a few more tests done next week, one of which is a nerve/muscle study, so hopefully something shows up in that!
The second, four months later, told me I had some sort of depressive disorder, even though I wasn't depressed at the time of symptom onset. I was certainly depressed by this time though, due to the symptoms I was experiencing!
The third and forth last month, despite symptoms having got progressively worse, and increased in number, have both alluded to again, myself having some sort of depressive disorder, which has manifested itself in a type of 'Pseudo Dementia'. I think by now they believe I'm just making the symptoms up for the sheer fun of it.
I would of laughed if I'd of not been so gob smacked at being given such a ridiculous diagnosis, given that pseudo dementia is something the elderly develop, due to having underlying, untreated depression, not someone of 35 years of age, who was perfectly happy and content in life at symptom onset.
Even more worrying however, is that when I quizzed one of the most recent two neuro's about this diagnosis, about whether it would cause the severe muscle twitching I've been experiencing, he replied, “but no one's seen your muscle twitching”. This was despite my father who was present, telling him he'd actually witnessed it himself on numerous occasions. So that was basically a tacit admission that the condition they're proposing I have, would not cause the one of the symptoms I'm presenting. Talk about contradicting themselves!
Thankfully though, I'm getting a few more tests done next week, one of which is a nerve/muscle study, so hopefully something shows up in that!
l love this pol. LOL I was in a car wreck in may after wards I had progressive symptoms all started with neck shoulder and headaches, now there is a huge list including numbness and tingling in my hands and feet, trouble swallowing and severe pain. I have twitches and maybe even seizures although there was only one time, I basically lost an hour of time in which I found myself on the floor covered up with a blanket and I had carpet burns on my forehead and elbow. My youngets daughter covered me up cause she said I was shivering really really bad and must have been cold. still havent figured out what happened there. anyways I have dx with Chiari from my PCP, and referred to a NL. He dx me with migraines when that didn't help, it was obesity, depression, conversion disorder, and oh yes my fav post traumatic syndrome.
this pol only let you choose one but I could have voted on all of them.
Angie
this pol only let you choose one but I could have voted on all of them.
Angie
You are certainly not losing your mind, Jib. Hang in there...
x
x
Hi,
I will keep you posted. Thanks for your support.
I'm sorry you had to go through it too but glad to know it is not me losing my mind..
Be Well
Jib
I will keep you posted. Thanks for your support.
I'm sorry you had to go through it too but glad to know it is not me losing my mind..
Be Well
Jib
Glad to help. Been there, done that and it is a horrid position to be placed in by the very people who are supposed to be helping us, especially when we as patients are chronically ill.
I don't want anyone to go through what I did-ever. Unfortuntely, it seems to happen all the time especially with neurological conditions.
Do let me know how you get on.
x
I don't want anyone to go through what I did-ever. Unfortuntely, it seems to happen all the time especially with neurological conditions.
Do let me know how you get on.
x
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