Every Dr is so quick to give us medication, despite us needing scans, therapists, whatever alternative. Why bother seeing a dr nowadays? I'd rather admit myself to hospital, than have a dr do it. I think i'd trust myself more.
This is very common and abusive treatment by physicians who are convinced we are faking. Feel free to visit our Stiff Person Syndrome Support page on Facebook. If you have reactions to anxiety, loud noise, overworking, heat,
and more, you may have SPS.
Your story is all too familiar to us. We have all been treated like nuts by Drs.
Think about it KAAZOOM, your symptoms changed when you became more anxious....so there is an overlapping element of somatization.. On the other hand it sounds like your doctors are dickheads ! they have no sympathy...
What disgraceful treatment, no PET or SPECT scan,nothing. The treatment of M.E. patients in this country is cruel and scandalous. It has been classified as a neurological illness of viral origin by the WHO since 1969 & is a well documented physical illness.Despite this a small group of psychiatrists have been allowed to declare it a mental disorder and to use our suffering as their milch cow. The Gibson report advised that they should be investigated as to their involvement with Unum and the DWP
That is the problem - ME is a political issue. I am still not sure that I have mE, although I have it seems likely, although not the type the psychiatrists call CFS. I have too many neurological symptoms for them! If you read the accounts of epidemic ME you will see that many had symptoms similar to mine. but the psychiatrists have chosen to ignore history because it suits their cause and that of their insurance paymasters!
it is really difficult to be confronted by disbelief and to be told that your illness is all in your mind. one of the problems that I have faced is that all of the neurologists that I have seen have followed the diagnosis of the previous one. They seem unable to accept that acolleague might be wrong and become tunnel visioned. I am really pleased to hear that you have been diagnosed. i hope that you are now getting proper treatment. Regards, Paul
And - you are so right - there is NO prof of somatisation - they have no idea how it happens - Richard Webster wrote about how many 'hysterics' were later found to have physiological illnesses ranging from Epilepsy to brain tumours etc...
MS - was called 'hysterical paralysis' until they found the brain legions - and punctate legions show up in ME patients if you can get the right scan - and SPECT scans resemble those of people with AIDS dementia...
I believe your consultant might be suffering from a severe form of psychological illness known as the 'god complex' - this makes sufferers believe that they know everything and have no need to listen to people and believe what they say.
I once mentioned that I was doing some gentle yoga to a consultant - his response 'well stop it then!' Hod e hum
I think that most of the consultants at the hospital I attended had a god complex. They also had a 'if other neurologists haven't found anything wrong nothing can be wrong' complex! Easpecially if it involves expensive tests.
How shameful! If the neurologist doesn't know what the matter is, he should say so instead of inventing something. You are remarkably cheerful, Paul. Take care with the medicine withdrawal, won't you?
Amazing... If I didn't know better, I would have sworn that I was watching myself describe my experiences at the National! Everything you say I can confirm (except my LP was cancelled by the neuro) although I wish your experience was unusual rather than the norm. All I can add is that while you looked it up on the internet... I actually spent a year being psychologically probed before being told the neuro was way wrong in his hysteria DX.
Hi Paul. Sorry you had such a rubbish experience at the hospital. The attitude of some of these people beggars belief. Sooner or later you'll get some answers.
Sorry to hear you were put through that. I like to remember Karma in these situations. Try not to let this get you down, a neurologist can't diagnose a psych disorder anyway. TC
Thank you Dex. I am still remaining positive. Thankfully I do believe that God loves me and will never let anything happen to me that isn't for my ultimate good. Even if I don't understand why I am going through. Of course for some such comments will just prove that I have a psych problem!
This is absolutely scandalous and you have my full sympathy. I perfectly understand how you're symptoms got worse due to the stress and appreciate fully your decision to question the drugs your on. I hope you find some solutions and all I can say is I'm sorry this is happening to such a nice person.
Thank you for your kind words of support. It will be interesting to see if coming off clonazepam at least makes any difference to me. I don't think that this is the total answer as I was put on them to try and help with the movements. What I didn't time to say on the video is that there are still a couple of test results to come back. But they said that they were convinced that they will be negative.
I can't understand how anyone can look at you and think it can possibly be in your head, how these people ever get qualified is beyond me!You're the loveliest Psych I know, good to have you back Paul! God bless and chin up!
Hi Anne, I think that I want to just leave things at the moment. They did find that I have borderline type 2 diabetes, so this may account for some of my symptoms. I am going to concentrate on improving my diet, coming off some of the drugs that I am on, and then I will be able to see what is what. I'm not sure I am likely to be taken seriously by any doctor now I have been given a conversion disorder label.
I am so sorry that you were treated this way. I have experienced the same. We go for a diagnosis and then they give us labels that make the next doctor view us as mental patients. I hope you will not give up looking for answers. Take care
how can anyone who see's you think that your symtoms are in your head? its beyond me how these people get qualified really, good to have you back paul!loveliest psycho I know!LOL
Every Dr is so quick to give us medication, despite us needing scans, therapists, whatever alternative. Why bother seeing a dr nowadays? I'd rather admit myself to hospital, than have a dr do it. I think i'd trust myself more.
BabyGurl00818 1 year ago
Those doctors sound very arrogant and ignorant.
Everybody knows stress causes dystonia symptoms to worsen!
This is not psychogenic. I can see that. What sort of fools are they are?
You need to look up a neurologist in your area that specialises in movement disorders & give that mob a miss.
Great your sharing all this.
julesdownunder 2 years ago
This is very common and abusive treatment by physicians who are convinced we are faking. Feel free to visit our Stiff Person Syndrome Support page on Facebook. If you have reactions to anxiety, loud noise, overworking, heat,
and more, you may have SPS.
Your story is all too familiar to us. We have all been treated like nuts by Drs.
Hang in there. Ask them for test for
Moersch Woltman Disease. (anti GAD antibodies) Keep fighting them. Ciao.
AngelinaNYC 2 years ago
Think about it KAAZOOM, your symptoms changed when you became more anxious....so there is an overlapping element of somatization.. On the other hand it sounds like your doctors are dickheads ! they have no sympathy...
metromotor 3 years ago
What disgraceful treatment, no PET or SPECT scan,nothing. The treatment of M.E. patients in this country is cruel and scandalous. It has been classified as a neurological illness of viral origin by the WHO since 1969 & is a well documented physical illness.Despite this a small group of psychiatrists have been allowed to declare it a mental disorder and to use our suffering as their milch cow. The Gibson report advised that they should be investigated as to their involvement with Unum and the DWP
Bluebottle83 3 years ago
That is the problem - ME is a political issue. I am still not sure that I have mE, although I have it seems likely, although not the type the psychiatrists call CFS. I have too many neurological symptoms for them! If you read the accounts of epidemic ME you will see that many had symptoms similar to mine. but the psychiatrists have chosen to ignore history because it suits their cause and that of their insurance paymasters!
kaazoom 3 years ago
How do sleep at night or do these jerky movements subside?
Accept it or turn to Prayer
or Christian Science only 1 people 1 know was healed in 10 year period
wwwFamilyPrideOrg 4 years ago
it is really difficult to be confronted by disbelief and to be told that your illness is all in your mind. one of the problems that I have faced is that all of the neurologists that I have seen have followed the diagnosis of the previous one. They seem unable to accept that acolleague might be wrong and become tunnel visioned. I am really pleased to hear that you have been diagnosed. i hope that you are now getting proper treatment. Regards, Paul
kaazoom 4 years ago
I was previously diagnosed as psychosomatic. Yeah I have arthritis, and a rare genetic connective tissue disorder and a rare neurological disorder.
The God Complex caused me a lot of damage...both physical and mental. Be weary of it.
ReineDeLaSeine14 4 years ago
And - you are so right - there is NO prof of somatisation - they have no idea how it happens - Richard Webster wrote about how many 'hysterics' were later found to have physiological illnesses ranging from Epilepsy to brain tumours etc...
MS - was called 'hysterical paralysis' until they found the brain legions - and punctate legions show up in ME patients if you can get the right scan - and SPECT scans resemble those of people with AIDS dementia...
deadgirldreaming 4 years ago
I believe your consultant might be suffering from a severe form of psychological illness known as the 'god complex' - this makes sufferers believe that they know everything and have no need to listen to people and believe what they say.
I once mentioned that I was doing some gentle yoga to a consultant - his response 'well stop it then!' Hod e hum
Much Love
xxx
deadgirldreaming 4 years ago
I think that most of the consultants at the hospital I attended had a god complex. They also had a 'if other neurologists haven't found anything wrong nothing can be wrong' complex! Easpecially if it involves expensive tests.
kaazoom 4 years ago
How shameful! If the neurologist doesn't know what the matter is, he should say so instead of inventing something. You are remarkably cheerful, Paul. Take care with the medicine withdrawal, won't you?
oldshoremore 4 years ago
Amazing... If I didn't know better, I would have sworn that I was watching myself describe my experiences at the National! Everything you say I can confirm (except my LP was cancelled by the neuro) although I wish your experience was unusual rather than the norm. All I can add is that while you looked it up on the internet... I actually spent a year being psychologically probed before being told the neuro was way wrong in his hysteria DX.
Don't give up... the answer will be out there.
Jan
janszafranski 4 years ago
Hi Paul. Sorry you had such a rubbish experience at the hospital. The attitude of some of these people beggars belief. Sooner or later you'll get some answers.
My very best wishes
Jon
Englander72 4 years ago
Thanks Jon. I am sure that I will get some answer eventually. But it looks as if not just yet.
kaazoom 4 years ago
Sorry to hear you were put through that. I like to remember Karma in these situations. Try not to let this get you down, a neurologist can't diagnose a psych disorder anyway. TC
dexhaven 4 years ago
Thank you Dex. I am still remaining positive. Thankfully I do believe that God loves me and will never let anything happen to me that isn't for my ultimate good. Even if I don't understand why I am going through. Of course for some such comments will just prove that I have a psych problem!
kaazoom 4 years ago
This is absolutely scandalous and you have my full sympathy. I perfectly understand how you're symptoms got worse due to the stress and appreciate fully your decision to question the drugs your on. I hope you find some solutions and all I can say is I'm sorry this is happening to such a nice person.
maximotion 4 years ago
Thank you for your kind words of support. It will be interesting to see if coming off clonazepam at least makes any difference to me. I don't think that this is the total answer as I was put on them to try and help with the movements. What I didn't time to say on the video is that there are still a couple of test results to come back. But they said that they were convinced that they will be negative.
kaazoom 4 years ago
I can't understand how anyone can look at you and think it can possibly be in your head, how these people ever get qualified is beyond me!You're the loveliest Psych I know, good to have you back Paul! God bless and chin up!
Penni
x
poppypat 4 years ago
Hi Anne, I think that I want to just leave things at the moment. They did find that I have borderline type 2 diabetes, so this may account for some of my symptoms. I am going to concentrate on improving my diet, coming off some of the drugs that I am on, and then I will be able to see what is what. I'm not sure I am likely to be taken seriously by any doctor now I have been given a conversion disorder label.
kaazoom 4 years ago
I am so sorry that you were treated this way. I have experienced the same. We go for a diagnosis and then they give us labels that make the next doctor view us as mental patients. I hope you will not give up looking for answers. Take care
Anne
lednugenna 4 years ago
You've made me blush!lol
kaazoom 4 years ago
how can anyone who see's you think that your symtoms are in your head? its beyond me how these people get qualified really, good to have you back paul!loveliest psycho I know!LOL
Penni
x
poppypat 4 years ago