Aa
Dismissiveness
How many of us have been initially dismissed by neurologists who say our symptoms are:
Dont you just love them.
Dont get in a TIZZY what the hell.
IF they were suffering the same you can betcha they would not be getting in a tizzy they would have been diagnosed very quickly and on some form of medication.
Talking to you all on this group I am amazed how strong you all really are, your just amazing people who have to put up with a lot in your lives.
HURRAH FOR US...........Your all AMAZING.............and I think cope really well with all the cr*p that is thrown at you.xxxxx
Dont get in a TIZZY what the hell.
IF they were suffering the same you can betcha they would not be getting in a tizzy they would have been diagnosed very quickly and on some form of medication.
Talking to you all on this group I am amazed how strong you all really are, your just amazing people who have to put up with a lot in your lives.
HURRAH FOR US...........Your all AMAZING.............and I think cope really well with all the cr*p that is thrown at you.xxxxx
And Mrs. Aristotle,
Gotta love the docs..mine says don't get in a tizzy about it... I wanna say "tizzy about what you haven't explained one friggin thing to me about...anything!!!!" ;o)
Nighty Night
Be Well
JibJen
Gotta love the docs..mine says don't get in a tizzy about it... I wanna say "tizzy about what you haven't explained one friggin thing to me about...anything!!!!" ;o)
Nighty Night
Be Well
JibJen
I really like my neuro.But he always tells me to live my life.Don't do stuff that makes me feel bad.But to be aware of my body and new symptoms..It is a hard position to be in. How is one suppose to try to ignore but yet be totally aware of symptoms?????
HI Stormy yes if you had just accepted all this tripe you would never been in the position now where at least you have some name to what ails you.
When pushed my neurologist said Myelitis. Untreated myelitis may rapidly lead to a permanently damaged spinal cord..
Nice one. As long as it isnt their spinal cord why should they worry.
When pushed my neurologist said Myelitis. Untreated myelitis may rapidly lead to a permanently damaged spinal cord..
Nice one. As long as it isnt their spinal cord why should they worry.
Lets see....First I was told I was anorexic and was suffering panic/anxiety attacks.Ya Think! I have lost 20 lbs in a month and my body is going crazy and no one can tell me what the hells wrong!
Then I was told that my brain mri was normal when it wasnt.
Then it was Bell's Palsy.
Rheumy said I show nothing autoimmune....
Now 11 months into this and finally finding a really good neuro. I have been dx with TM.I now have 15 brain lesions that were missed initially ,complicated migraines w/aura and am facing a possible MS dx.
Then I was told that my brain mri was normal when it wasnt.
Then it was Bell's Palsy.
Rheumy said I show nothing autoimmune....
Now 11 months into this and finally finding a really good neuro. I have been dx with TM.I now have 15 brain lesions that were missed initially ,complicated migraines w/aura and am facing a possible MS dx.
Yeah, someone suggested filming it on my phone. Trouble is, when it initially first started, it was prolonged twitching, in pretty much the same few predictable places every time. Now it's very violent twitching at times, in pretty much any muscle on my body, albeit it's normally only one or two actual twitches, which makes catching it on camera, or even trying to draw someone's attention to it very tricky. I'd like to think it will show up in some guise on the muscle study I'm having next week.
The twitching itself doesn't bother me - it's what it could be an indication of, given I've been progressively declining cognitively for a number of months now. I've posted another thread about my plight on the board which lists my symptoms.
I can feel a total degree of empathy with you on the job front. Whilst the one I had to give up earlier in the year wasn't particularly well paid, it was something I absolutely loved doing, and it broke my heart to have to give it up through no fault of my own. That's what makes it even more infuriating when you're not taken seriously by doctors. Like “yeah, I've given up my previously very happy and fulfilling life, in exchange for this, which sees me housebound, just for a laugh!”
Four neurlogists down the line, and I've not yet met one who has any interpersonal skills or empathy for my situation. Only seems to be neurologists though for some reason, I've been to see a wonderful endocrinologist, and my gastroentrologist is a lovely chap, who's gone out of his way to get things done for me.
It's pretty much like you say, if the symptoms you're presenting, don't immediately fit the standard profile of a diagnosis, instead of actually thinking further investigation is required to get to the bottom of things, they seem rather more inclined to just fob you off with what seems to be a neurologists most favoured line of “it's all psychological”, or “it's depression related.”
What worries me the most, is up until the last couple of months, I've been quite relentless in my pursuit of getting new referrals, investigations, etc done, if only to get a diagnosis if nothing else. Now though, I'm no longer really able to speak on the phone, and don't really have anyone to 'pass the baton over to', so to speak to fight my corner for me.
I've been told by my GP, that if this next current batch of tests I'm having next week, doesn't turn up anything, then I've no choice really, other than to accept the diagnosis that's been hinted at by the two most recent neuro's I've seen. Under no circumstances, will I be able to obtain a referral to a fifth neurologist. Mind you, given the humiliation I've had to ensure at a couple of previous appointments, I'm not actually sure I'd want to see a fifth neuro.
The twitching itself doesn't bother me - it's what it could be an indication of, given I've been progressively declining cognitively for a number of months now. I've posted another thread about my plight on the board which lists my symptoms.
I can feel a total degree of empathy with you on the job front. Whilst the one I had to give up earlier in the year wasn't particularly well paid, it was something I absolutely loved doing, and it broke my heart to have to give it up through no fault of my own. That's what makes it even more infuriating when you're not taken seriously by doctors. Like “yeah, I've given up my previously very happy and fulfilling life, in exchange for this, which sees me housebound, just for a laugh!”
Four neurlogists down the line, and I've not yet met one who has any interpersonal skills or empathy for my situation. Only seems to be neurologists though for some reason, I've been to see a wonderful endocrinologist, and my gastroentrologist is a lovely chap, who's gone out of his way to get things done for me.
It's pretty much like you say, if the symptoms you're presenting, don't immediately fit the standard profile of a diagnosis, instead of actually thinking further investigation is required to get to the bottom of things, they seem rather more inclined to just fob you off with what seems to be a neurologists most favoured line of “it's all psychological”, or “it's depression related.”
What worries me the most, is up until the last couple of months, I've been quite relentless in my pursuit of getting new referrals, investigations, etc done, if only to get a diagnosis if nothing else. Now though, I'm no longer really able to speak on the phone, and don't really have anyone to 'pass the baton over to', so to speak to fight my corner for me.
I've been told by my GP, that if this next current batch of tests I'm having next week, doesn't turn up anything, then I've no choice really, other than to accept the diagnosis that's been hinted at by the two most recent neuro's I've seen. Under no circumstances, will I be able to obtain a referral to a fifth neurologist. Mind you, given the humiliation I've had to ensure at a couple of previous appointments, I'm not actually sure I'd want to see a fifth neuro.
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
Hi,
I know..It's funny and I don't know who else may have done this in the past but whenever I went to my neuro appts. I would never talk about my odd symptoms I experienced because I was seeing him for migraines so I thought well what would leg cramps and fatigue and things like that have to do with migraines..I always stuck talking with him about my migraines..never anything else I figured it didn't have anything to do with migraines and he was a migraine doc so why bother...I did tell him about when I satrted to have cognitive issues and visuual issues ....then when my last MRI came back with the findings I was the one that said i was researching my visual diturbances and cognitive ( I never knew my results until after the appointment) stuff on the web and it brought me to an MS sight..I asked if he thought it could be MS? he said HMMM funny you should say that but I am not ready to do an LP???Don't get yourself in a tizzy he said I'll see you in 4months....and nothing elsenothing else..he did not tell me what my MRI report said (which I had to ask the receptionist for a copy on my own on the way out) after I got that I reaearched my results myself..(how I found this website) i realized..wait a minute..I have had these other symptoms and learned about demyelinating meant ..When I went back for my follow up and tried to to bring it up he just says migraine...I never got the chance to tell him hey I have had this happen but never told you.......he asked me if I wanted to go off my migraine meds????never spoke aabout LP or other tests..... appointment lasted not even 5 mins. I feel like if I ever do get the chance to tell him he may be thinking I am "making it up" ..
I just want an answer and I am tired, literally, whether it IS MS or something else..just do some tests and talk to me.
Thanks for support and lending an ear..I want to talk to my PCP about another doc or have hime do my tests..I will show him my report...
Jib
I know..It's funny and I don't know who else may have done this in the past but whenever I went to my neuro appts. I would never talk about my odd symptoms I experienced because I was seeing him for migraines so I thought well what would leg cramps and fatigue and things like that have to do with migraines..I always stuck talking with him about my migraines..never anything else I figured it didn't have anything to do with migraines and he was a migraine doc so why bother...I did tell him about when I satrted to have cognitive issues and visuual issues ....then when my last MRI came back with the findings I was the one that said i was researching my visual diturbances and cognitive ( I never knew my results until after the appointment) stuff on the web and it brought me to an MS sight..I asked if he thought it could be MS? he said HMMM funny you should say that but I am not ready to do an LP???Don't get yourself in a tizzy he said I'll see you in 4months....and nothing elsenothing else..he did not tell me what my MRI report said (which I had to ask the receptionist for a copy on my own on the way out) after I got that I reaearched my results myself..(how I found this website) i realized..wait a minute..I have had these other symptoms and learned about demyelinating meant ..When I went back for my follow up and tried to to bring it up he just says migraine...I never got the chance to tell him hey I have had this happen but never told you.......he asked me if I wanted to go off my migraine meds????never spoke aabout LP or other tests..... appointment lasted not even 5 mins. I feel like if I ever do get the chance to tell him he may be thinking I am "making it up" ..
I just want an answer and I am tired, literally, whether it IS MS or something else..just do some tests and talk to me.
Thanks for support and lending an ear..I want to talk to my PCP about another doc or have hime do my tests..I will show him my report...
Jib
Hi Jibjen
It seems we all have such similar stories, its really quite amazing. It is unfortunate that it falls to the patient in limbo to go throught their history but In my case this was the only way I began to get answers.
I want to help others. I hope I can prevent limbolanders from possibly suffering irreparable damage to their health whilst awaiting diagnosis.
x
It seems we all have such similar stories, its really quite amazing. It is unfortunate that it falls to the patient in limbo to go throught their history but In my case this was the only way I began to get answers.
I want to help others. I hope I can prevent limbolanders from possibly suffering irreparable damage to their health whilst awaiting diagnosis.
x
Hi supo_uk
And Thanks....I am glad to know that migraines can't cause demyelinating lesions...which means stop blaming my migraines.....I have symptoms that don't even correspond with them...I have an appoint. with PCP next Thursday..Can't wait..I am asking him to refer me to someone and start ruling things out for me.
It's actually sad I had to go through my report and learn about it on my own......I should have gone to med school...what really p*&$#@ me off is how much I spend for health care and don't get it.
;o) Thanks a bunch
And Thanks....I am glad to know that migraines can't cause demyelinating lesions...which means stop blaming my migraines.....I have symptoms that don't even correspond with them...I have an appoint. with PCP next Thursday..Can't wait..I am asking him to refer me to someone and start ruling things out for me.
It's actually sad I had to go through my report and learn about it on my own......I should have gone to med school...what really p*&$#@ me off is how much I spend for health care and don't get it.
;o) Thanks a bunch
Hi Jibjen
Well I am going to add my two cents.The following is very important:
*********You cannot make yourself demyelinate***************
Tell the neuro that calmly when they continue to be obstructive then dump him and find another neuro.
Also remind him that migraines do NOT cause demyelinating lesions-calmly.
Using the word 'suggestive' is them being ridiculous and trying to cover their b*tts. It is either demyelinating or it isn't...
Amazing how many of us are left to figure this out for ourselves when we are sick and tired, isn't it?
Good luck
Well I am going to add my two cents.The following is very important:
*********You cannot make yourself demyelinate***************
Tell the neuro that calmly when they continue to be obstructive then dump him and find another neuro.
Also remind him that migraines do NOT cause demyelinating lesions-calmly.
Using the word 'suggestive' is them being ridiculous and trying to cover their b*tts. It is either demyelinating or it isn't...
Amazing how many of us are left to figure this out for ourselves when we are sick and tired, isn't it?
Good luck
Hi
I tried to teel my doc about it but I was shut down and told it was all migraine.
My MRI report stated possible demyelinating process and the lesions are located in supratentorial white matter, most predominantly in centrum semiovale and high convexity subcortical white matter. (what does high convexity mean)
I have been trying to look these things up....
I am going to PCP next week for a discussion about who else to see.
Thanks for your support...alot of symptoms I never reported because i figured i was going for migraines but as they are occurring and learning more, I have been bringing them up and I feel like he thinks I am making it up....lesions don't lie do they..I actually discussed this before he even saw my MRI so how could I make it up ;o(
I tried to teel my doc about it but I was shut down and told it was all migraine.
My MRI report stated possible demyelinating process and the lesions are located in supratentorial white matter, most predominantly in centrum semiovale and high convexity subcortical white matter. (what does high convexity mean)
I have been trying to look these things up....
I am going to PCP next week for a discussion about who else to see.
Thanks for your support...alot of symptoms I never reported because i figured i was going for migraines but as they are occurring and learning more, I have been bringing them up and I feel like he thinks I am making it up....lesions don't lie do they..I actually discussed this before he even saw my MRI so how could I make it up ;o(
Good post to Jibjen, I agree she is being fobbed off and i would pay to see my notes without a doubt.
Hi Jibjen
I just saw your post.
As I just mentioned neurological symtoms which accompany migraine resolve with the migraine. It stands to reason that neuro symptoms which you mention that do not resolve with the migraine are, imo, are something else.
Are your lesions demyelinating? Where are they located? Migraine does not cause demyelinating lesions.
As per the Limboland Toolkit you should consider getting your medical records because my personal opinion is you are being fobbed off. This is the exact term which was used by a neurologist I saw when they saw my health situation which has similarities to yours (cognitive problems, tremor, spasms, eye issues)-
"the other neurologists are fobbing you off by trying to blame your symtoms on migraines".
I felt like saying, 'ya THINK...' ;)
Unfortunately this is very common and very, very wrong.
Good luck
I just saw your post.
As I just mentioned neurological symtoms which accompany migraine resolve with the migraine. It stands to reason that neuro symptoms which you mention that do not resolve with the migraine are, imo, are something else.
Are your lesions demyelinating? Where are they located? Migraine does not cause demyelinating lesions.
As per the Limboland Toolkit you should consider getting your medical records because my personal opinion is you are being fobbed off. This is the exact term which was used by a neurologist I saw when they saw my health situation which has similarities to yours (cognitive problems, tremor, spasms, eye issues)-
"the other neurologists are fobbing you off by trying to blame your symtoms on migraines".
I felt like saying, 'ya THINK...' ;)
Unfortunately this is very common and very, very wrong.
Good luck
Hello,
I'm with you but have you beat with 20 lesions and same symptoms although my migraines get the blame....My most recent MRI showed 20 foci of T2 and FLAIR hyperintensities taken in June...I have had cognitive issues and vision problems but eye exam says vision is 20/20..I also have tremors that come and go, spasms , zaps & zings, and numbness on my left side...since about August....All supposedly due to migraines.
I'm with you but have you beat with 20 lesions and same symptoms although my migraines get the blame....My most recent MRI showed 20 foci of T2 and FLAIR hyperintensities taken in June...I have had cognitive issues and vision problems but eye exam says vision is 20/20..I also have tremors that come and go, spasms , zaps & zings, and numbness on my left side...since about August....All supposedly due to migraines.
We need an all-of-the-above, or some other type of multiple response on that poll. :-)
I had way too many to choose just one!
I had way too many to choose just one!
Actually I could have marked more than one! Heres what I've been told: migraine, fibromyalgia, conversion disorder, stress, depression & anxiety! I wonder which one of these causes all my sx & 18 lesions on my brain?? hmmmm. The largest was 6mm & my mri is on my profile. I was told my lp was neg. although I haven't seen the report yet. I also wonder which one of these causes incontinance, inability to walk for any distance,twitches, spasms , zaps & zings, loss of feeling in my limbs. & heat intolerance, & paralysis lasting for a week at a time??
30 THE NEW 80? Yes in the eyes of the radiologist LOL.
I know a few others who have been told that white spots/foci on their MRI were age related at about age 30. Mad or what.
The only time I got a really good white blob on my MRI which looked like a big lesion the radiologist said it was PROBABLY AN ARC on the film. Priceless innit?
Any excuse. Makes you wonder what is the point in having them LOL, noisy things.
I know a few others who have been told that white spots/foci on their MRI were age related at about age 30. Mad or what.
The only time I got a really good white blob on my MRI which looked like a big lesion the radiologist said it was PROBABLY AN ARC on the film. Priceless innit?
Any excuse. Makes you wonder what is the point in having them LOL, noisy things.
Very interesting.
I was in my very early 30's and the lesions were dismissed as age related.
What?
Is 30 the new 80? ;)
I was in my very early 30's and the lesions were dismissed as age related.
What?
Is 30 the new 80? ;)
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