Aa
Back from my appointment
Hi Everyone,
Well, I am back from my appt.
I told him I was feeling better but I still had numbness and tingling but it is less frequent than last time I saw him and is more of a come and go basis....
My nuero said thre was no change on my MRI from last one done in June 2009
I asked if he thought this was MS and he said no but it will be a wait and see kind of thing and we need to continue to track my sensory symptoms ..He said he wanted to see me in 2 months and start weening me off my migraine meds to see if there is a corralation between the 2...
I don't know if this still leaves me in limbo..
JibJen
Well, I am back from my appt.
I told him I was feeling better but I still had numbness and tingling but it is less frequent than last time I saw him and is more of a come and go basis....
My nuero said thre was no change on my MRI from last one done in June 2009
I asked if he thought this was MS and he said no but it will be a wait and see kind of thing and we need to continue to track my sensory symptoms ..He said he wanted to see me in 2 months and start weening me off my migraine meds to see if there is a corralation between the 2...
I don't know if this still leaves me in limbo..
JibJen
To: all of the above:
this world of limboland and dealing with the medical proffessionals (or so they think they are) is unbeleivable...
Jib
this world of limboland and dealing with the medical proffessionals (or so they think they are) is unbeleivable...
Jib
Oh gawd, binx and inPain4evr, you sum it up exactly and so well.
So you also have a social security system that requires endless certification from 'professionals'. These SS 'people' can be completely obnoxious. You'd think they didn't have families and friends who suffer life's slings and arrows too....(oh, hang on - maybe they don't...maybe they haul themselves out of boxes every morning like daylight zero-brained zombies...)
ME TOO! re the mental health thing. I've had assessments of post-traumatic stress disorder and severe depression from MH professionals yet cannot get any treatment because it seems a) all the awfulness is real, it's not in my head (that's situational isn't it?) and b) if they treat me for MH probs then it could be tantamount to admitting guilt. Oh yes, there's a c) that's also barely articulated...I'm too smart to be so depressed and traumatised, I have the intellectual wherewithal to get on with it myself. NOT.
And Jibs...I can sadly assure you that all that energy is entirely mental! I am physically catatonic most of the time - the typical sloth of the depressed and dejected...On the one hand,i reckon I'd be dead by now if I hadn't been able to think through and contextualise the abuses I've been subject to. On the other, I just don't want to know the vast majority IRL anymore - at least, I don't have any interest in those who consider themselves to be 'normal humans'.
But yep, we can do all the prepping and pepping you want!! In fact, maybe we could develop a kind of generic prep formula. You know, a list of all the Qs you need to ask and a list of helpful advice and support from our limboland friends....;-)
I'm absolutely terrified of going to see this next neuro. I know I need loads of encouragement there - and confidence building (which they've systematically crushed over these past 5yrs). I can't bear the thought of yet another doc drossing me. My son tried to assure me that 'It'll be different now, now we have the xray physical evidence...'
*snort!!* Bless! He's such an innocent, isn't he?! I asked him if he knew how much clinical evidence, signs and symptoms doctors have already ignored and worse, turned it into 'anxiety'...
THIS is what terrifies me, and not without material reason: the chap a few doors down was avoidably killed by our former GP's refusal to give him simple tests at the right time, was sent away with indigestion tabs for 'stress'. A young mum had to have a colostomy and now a bag because the very same GP refused to go and see her after her husband kept reporting post-Csection agony. Another older lady was within an hour of losing her leg due to neglected necrosis. Neglected by? Yep, you guessed. This guy is apparently known as the neighbourhood's Dr Shipman... (Dr Shipman was a rogue GP in the north of England who, over many years, surreptitiously bumped off hundreds of his elderly patients. His murders weren't discovered for years because the culture here is that doctors can do no wrong; patients are ignorant troublemakers...)
So that's partly why I am so frightened. I guess I use that fear sometimes to get mentally energised or angry. Which brings me to all this apologising we do about ranting and groaning...hey, I'm fine with it all! Please never feel that I need an apology - blimey, the things that most limbolanders have been and are going through are truly the stuff of nightmares...if you can't rant and whine here, where you can you...;-)
(Plus, I've survived ...The Teenage Years...*gulp* )
hugs to all
samxx
So you also have a social security system that requires endless certification from 'professionals'. These SS 'people' can be completely obnoxious. You'd think they didn't have families and friends who suffer life's slings and arrows too....(oh, hang on - maybe they don't...maybe they haul themselves out of boxes every morning like daylight zero-brained zombies...)
ME TOO! re the mental health thing. I've had assessments of post-traumatic stress disorder and severe depression from MH professionals yet cannot get any treatment because it seems a) all the awfulness is real, it's not in my head (that's situational isn't it?) and b) if they treat me for MH probs then it could be tantamount to admitting guilt. Oh yes, there's a c) that's also barely articulated...I'm too smart to be so depressed and traumatised, I have the intellectual wherewithal to get on with it myself. NOT.
And Jibs...I can sadly assure you that all that energy is entirely mental! I am physically catatonic most of the time - the typical sloth of the depressed and dejected...On the one hand,i reckon I'd be dead by now if I hadn't been able to think through and contextualise the abuses I've been subject to. On the other, I just don't want to know the vast majority IRL anymore - at least, I don't have any interest in those who consider themselves to be 'normal humans'.
But yep, we can do all the prepping and pepping you want!! In fact, maybe we could develop a kind of generic prep formula. You know, a list of all the Qs you need to ask and a list of helpful advice and support from our limboland friends....;-)
I'm absolutely terrified of going to see this next neuro. I know I need loads of encouragement there - and confidence building (which they've systematically crushed over these past 5yrs). I can't bear the thought of yet another doc drossing me. My son tried to assure me that 'It'll be different now, now we have the xray physical evidence...'
*snort!!* Bless! He's such an innocent, isn't he?! I asked him if he knew how much clinical evidence, signs and symptoms doctors have already ignored and worse, turned it into 'anxiety'...
THIS is what terrifies me, and not without material reason: the chap a few doors down was avoidably killed by our former GP's refusal to give him simple tests at the right time, was sent away with indigestion tabs for 'stress'. A young mum had to have a colostomy and now a bag because the very same GP refused to go and see her after her husband kept reporting post-Csection agony. Another older lady was within an hour of losing her leg due to neglected necrosis. Neglected by? Yep, you guessed. This guy is apparently known as the neighbourhood's Dr Shipman... (Dr Shipman was a rogue GP in the north of England who, over many years, surreptitiously bumped off hundreds of his elderly patients. His murders weren't discovered for years because the culture here is that doctors can do no wrong; patients are ignorant troublemakers...)
So that's partly why I am so frightened. I guess I use that fear sometimes to get mentally energised or angry. Which brings me to all this apologising we do about ranting and groaning...hey, I'm fine with it all! Please never feel that I need an apology - blimey, the things that most limbolanders have been and are going through are truly the stuff of nightmares...if you can't rant and whine here, where you can you...;-)
(Plus, I've survived ...The Teenage Years...*gulp* )
hugs to all
samxx
dear inPain4evr,
i'm completely there with you on this one, having been denied social security and awaiting reconsideration as i type this. without a diagnosis from a doc that fits into their disability scheme, we're pretty much hosed. it angers me beyond words. well, at least beyond words i can use on this forum that won't get converted into *****.
i, too, have been told by my counselor--a former RN who specializes in helping people deal with chronic illness--that any depression i am experiencing at this point is purely situational. if i were well, i wouldn't be depressed. it's not even a chicken and the egg question--without the illness, i'd be skipping down the street, hand-in-hand with my family, gainfully employed, with my biggest concern being what to make for dinner. i have glimpses of what it would be like sometimes, but the tunnel now seems darker and more endless than ever to me right now. i'm having a pretty hard time as of late.
waaah. whine. whine. whine.
binx
i'm completely there with you on this one, having been denied social security and awaiting reconsideration as i type this. without a diagnosis from a doc that fits into their disability scheme, we're pretty much hosed. it angers me beyond words. well, at least beyond words i can use on this forum that won't get converted into *****.
i, too, have been told by my counselor--a former RN who specializes in helping people deal with chronic illness--that any depression i am experiencing at this point is purely situational. if i were well, i wouldn't be depressed. it's not even a chicken and the egg question--without the illness, i'd be skipping down the street, hand-in-hand with my family, gainfully employed, with my biggest concern being what to make for dinner. i have glimpses of what it would be like sometimes, but the tunnel now seems darker and more endless than ever to me right now. i'm having a pretty hard time as of late.
waaah. whine. whine. whine.
binx
It is not only the British that need that elusive piece of doctor document. Here in the US it is also required as proof of disability or you get shoveled under the carpet to fend for yourself. In the years that have gone by since the symptoms began I have not been able to get one doc to pin this down. Most have told me it's depression, anxiety, all in my head but they won't write that down either because it would give a NAME to my illness. Not a one of them is willing to put their signature to anything because they might just be wrong. So, where does this leave me? Here, in LimboLand.
By the way, the mental health people, who I went to see because I was starting to believe the doctors, do not feel I am anything but depressed by the very real physical symptoms I have. Doctors say it's all in my head, the psychiatrist says it's physical. What is a person to do with that?
Sorry, I get a bit angry thinking on this topic. Please forgive the rant.
By the way, the mental health people, who I went to see because I was starting to believe the doctors, do not feel I am anything but depressed by the very real physical symptoms I have. Doctors say it's all in my head, the psychiatrist says it's physical. What is a person to do with that?
Sorry, I get a bit angry thinking on this topic. Please forgive the rant.
No problem silkcut - I love your energy..I need to be pumped up!!! I have an appointment in 2 months...I'll let you know when it gets close and you can give me a pep talk !!!
I would love to be the one to tell my doc well let's "wait and see"....no problem for them to wait and see....is it while patients have to struggle..ugghhh
Have a good one!
JibJen
I would love to be the one to tell my doc well let's "wait and see"....no problem for them to wait and see....is it while patients have to struggle..ugghhh
Have a good one!
JibJen
Hi all
..yes, absolutely, whatever is this 'waiting and seeing' about?
There comes a point when you just have to draw a line under waiting and get on with actively pursuing diagnoses.
I sometimes wonder how one would be treated with the same sx if one were The Queen or Michelle Obama...honest Q here: would the docs REALLY send them away telling them to 'wait and see'- apparently endlessly?
I don't think so. So what is the difference? Money? Power? Fear (on the part of the docs)?
The ridiculous thing is that a swift blast of proper tests at the beginning of an obviously debilitating illness would quickly rule out a load of conditions and even find the cause. Instead they seem to automatically jump to 'conversion disorder' and let the disease rumble on and on with all the horrible exponential effects that causes. Like, for example, binx mentions not being able to work for a year....that's dreadful, a real waste of skills and talent and puts family economics at risk, thus creating yet more problems in other areas...it becomes a vicious circle.
Then, the longer it goes on, the less and less able one is to get back to any sort of work.
I soon lost my practice - a thriving business employing several people. I'd built that from scratch during my 30s and 40s. I'm so out of touch now that I would have to go back to studying to get up to date professional knowledge and renew quals. It's not going to happen now given my age, level of disability and relative poverty.
So...what do I do? Turn up at the gvt job centre telling them that I want a job but 'oh! hang on a minute...I can't sit at a desk for more than 20mins because of my neck and I keep keeling over...!' They'd ask me straightaway for a medical certificate. And I'd have to say that there's been no medical diagnosis that explains this disability for 5yrs....result: more hassle with yet another care-less branch of gvt.
British Limbolanders will know exactly what I mean about the abysmal bureaucratic impact of not having a formal label (and treatment) and the almighty piece of official paper from The Doctor. It affects your whole life - because then you get drawn into exasperating and exhausting battles with callous gvt penpushers...and worse.
Do doctors - including neurologists - have no idea at all about their role in the chronic degradation of our lives?
Sorry...went off on a ramble there. Don't mean to hijack your thread Jibby!
But it's a bit of an illustration in practical terms of just some of the things this 'wait and see' nonsense does.
Over pizza (mmmmm....PIZZZAAAA!) tonight, my son, D-I-L and I were talking about exactly this: the possibility that the neuro on 3rd Feb is going to carry on down that line. Son says that if neuro starts on that route he'll barricade us in the office and not let the &$^&%£ out until there is a definitive dx, appts for MRIs and MRAs and a proper treatment plan!
After 5+yrs, it gets you that angry. I always used to wonder about all the signs we have in doctors' surgeries and hospitals deterring violence from patients. Now I know why.
Violence is never acceptable - but then, nor is care-less or 'benign' negligence just because they can and we're relatively powerless and, worse, ill/in pain/suffering.
There's my tuppence-worth, for what it's worth! ;-)
I hope everyone's having a good weekend - or as good as possible...
hugs all
samxx
..yes, absolutely, whatever is this 'waiting and seeing' about?
There comes a point when you just have to draw a line under waiting and get on with actively pursuing diagnoses.
I sometimes wonder how one would be treated with the same sx if one were The Queen or Michelle Obama...honest Q here: would the docs REALLY send them away telling them to 'wait and see'- apparently endlessly?
I don't think so. So what is the difference? Money? Power? Fear (on the part of the docs)?
The ridiculous thing is that a swift blast of proper tests at the beginning of an obviously debilitating illness would quickly rule out a load of conditions and even find the cause. Instead they seem to automatically jump to 'conversion disorder' and let the disease rumble on and on with all the horrible exponential effects that causes. Like, for example, binx mentions not being able to work for a year....that's dreadful, a real waste of skills and talent and puts family economics at risk, thus creating yet more problems in other areas...it becomes a vicious circle.
Then, the longer it goes on, the less and less able one is to get back to any sort of work.
I soon lost my practice - a thriving business employing several people. I'd built that from scratch during my 30s and 40s. I'm so out of touch now that I would have to go back to studying to get up to date professional knowledge and renew quals. It's not going to happen now given my age, level of disability and relative poverty.
So...what do I do? Turn up at the gvt job centre telling them that I want a job but 'oh! hang on a minute...I can't sit at a desk for more than 20mins because of my neck and I keep keeling over...!' They'd ask me straightaway for a medical certificate. And I'd have to say that there's been no medical diagnosis that explains this disability for 5yrs....result: more hassle with yet another care-less branch of gvt.
British Limbolanders will know exactly what I mean about the abysmal bureaucratic impact of not having a formal label (and treatment) and the almighty piece of official paper from The Doctor. It affects your whole life - because then you get drawn into exasperating and exhausting battles with callous gvt penpushers...and worse.
Do doctors - including neurologists - have no idea at all about their role in the chronic degradation of our lives?
Sorry...went off on a ramble there. Don't mean to hijack your thread Jibby!
But it's a bit of an illustration in practical terms of just some of the things this 'wait and see' nonsense does.
Over pizza (mmmmm....PIZZZAAAA!) tonight, my son, D-I-L and I were talking about exactly this: the possibility that the neuro on 3rd Feb is going to carry on down that line. Son says that if neuro starts on that route he'll barricade us in the office and not let the &$^&%£ out until there is a definitive dx, appts for MRIs and MRAs and a proper treatment plan!
After 5+yrs, it gets you that angry. I always used to wonder about all the signs we have in doctors' surgeries and hospitals deterring violence from patients. Now I know why.
Violence is never acceptable - but then, nor is care-less or 'benign' negligence just because they can and we're relatively powerless and, worse, ill/in pain/suffering.
There's my tuppence-worth, for what it's worth! ;-)
I hope everyone's having a good weekend - or as good as possible...
hugs all
samxx
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