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Sophia Mirza the wrong diagnosis - treated mentally insane
I think it is could that anyone who hasn't heard of Sophia's journey with M.E. should be aware of how she was treated barbarically even in 2005. It made me cry.
This is what we have to put up with.
Sadly my own Neurologist told me he thought M.E. was just a load of rubbish I kid you not only 2 weeks ago. We have a long way to go before M.E. is taken seriously me thinks. When I said to him that the WHO had designated it as a physical neurological disorder he LAUGHED and smirked actually. Stupid man.
http://www.sophiaandme.org.uk/
A very brave young lady let down by our appalling system. RIP.xx
This is what we have to put up with.
Sadly my own Neurologist told me he thought M.E. was just a load of rubbish I kid you not only 2 weeks ago. We have a long way to go before M.E. is taken seriously me thinks. When I said to him that the WHO had designated it as a physical neurological disorder he LAUGHED and smirked actually. Stupid man.
http://www.sophiaandme.org.uk/
A very brave young lady let down by our appalling system. RIP.xx
Hi well I was misdiagnosed a few times to be honest.
One of the worse was when I was living in Hong Kong. Ex-Hubby was in the army at the time and I had 2 young children with no support.
Anyway I started to get the worse pain in my top right hand side near my breast, it would radiate to the back. I often felt sick and bilious. I was about 23 very tall and very slim.
Anyway it got worse and worse and I kept going to see the doctor. I was told it was anxiety and depression. Honestly.
When we went back to the UK I felt awful, and was having other symptoms like feeling really sick and almost hyperventilating. I ended up at the A&E more than once and was given valium in the end to calm me down.
I got so desperate I spoke to my dad about it all and told him the pain was horrible and it was getting worse and I was actually feeling quite ill but the doctors had put it down to depression and anxiety.
He paid for me to see his GP privately after discussing my symptoms he did a test on me as he thought I could have possibly gallstones even at 25 (yes 2 years on) and being very slim it would not be normal because gallstones were more attributed to people over 40 and over weight. He wasnt happy with the test so I had to go immediately to have a special xray with foul tasting liquid. It showed up a large shadow in my gall bladder.
I was rushed into hospital and spent over 7 days in the intensive care unit after a major operation to remove what the surgeon said was one of the biggest gall stones he had ever seen. Basically my gallbladder was rotten and poisoning my system, that is why I kept feeling weird in actual fact I was told if I had left it much longer I could have died of peritonitis.
So from being told it was depression and anxiety I was then told I was lucky to be alive.
It happened again prior and after, I have no faith in doctors non what so ever and when I am ill I KNOW I am ill.
xx
One of the worse was when I was living in Hong Kong. Ex-Hubby was in the army at the time and I had 2 young children with no support.
Anyway I started to get the worse pain in my top right hand side near my breast, it would radiate to the back. I often felt sick and bilious. I was about 23 very tall and very slim.
Anyway it got worse and worse and I kept going to see the doctor. I was told it was anxiety and depression. Honestly.
When we went back to the UK I felt awful, and was having other symptoms like feeling really sick and almost hyperventilating. I ended up at the A&E more than once and was given valium in the end to calm me down.
I got so desperate I spoke to my dad about it all and told him the pain was horrible and it was getting worse and I was actually feeling quite ill but the doctors had put it down to depression and anxiety.
He paid for me to see his GP privately after discussing my symptoms he did a test on me as he thought I could have possibly gallstones even at 25 (yes 2 years on) and being very slim it would not be normal because gallstones were more attributed to people over 40 and over weight. He wasnt happy with the test so I had to go immediately to have a special xray with foul tasting liquid. It showed up a large shadow in my gall bladder.
I was rushed into hospital and spent over 7 days in the intensive care unit after a major operation to remove what the surgeon said was one of the biggest gall stones he had ever seen. Basically my gallbladder was rotten and poisoning my system, that is why I kept feeling weird in actual fact I was told if I had left it much longer I could have died of peritonitis.
So from being told it was depression and anxiety I was then told I was lucky to be alive.
It happened again prior and after, I have no faith in doctors non what so ever and when I am ill I KNOW I am ill.
xx
This is just heartbreaking.....
I never thought in a million years that I would be experiencing somthing no doctor could put a name too. I never thought I would be labeled a crazy anorexic.I recieved absolutly no help or treatment from any doctor I saw and there were a bunch.Why do doctors treat people this way.Especially women...It's put off on hormons or anxiety. The tests come back normal..Maybe it's because they have run the wrong tests! Sometimes doctors forget they are human and are capable of mistakes.They are just people and they can be very wrong.
I have found that neurologist as a whole have no bedside manner or personallity. Neurological issues are teriffying and dealing with a judgmental condesending doctor with a nasty attitude just makes things worse.How would they feel if it was happening to them or a loved one?
I have been fortunate to find a fantastic neuro who acts like a real person with feelings and a personallity. He listens to me and answers my questions. After 6 months of not having any answers he gave me some.Though I am still in Limbo Land I am not alone. He does not push meds on me because I am not a pill taker.He does not push unneeded tests or proceedures.He is a rarity.
Please take care, Theresa....
Please Take care,Theresa
I never thought in a million years that I would be experiencing somthing no doctor could put a name too. I never thought I would be labeled a crazy anorexic.I recieved absolutly no help or treatment from any doctor I saw and there were a bunch.Why do doctors treat people this way.Especially women...It's put off on hormons or anxiety. The tests come back normal..Maybe it's because they have run the wrong tests! Sometimes doctors forget they are human and are capable of mistakes.They are just people and they can be very wrong.
I have found that neurologist as a whole have no bedside manner or personallity. Neurological issues are teriffying and dealing with a judgmental condesending doctor with a nasty attitude just makes things worse.How would they feel if it was happening to them or a loved one?
I have been fortunate to find a fantastic neuro who acts like a real person with feelings and a personallity. He listens to me and answers my questions. After 6 months of not having any answers he gave me some.Though I am still in Limbo Land I am not alone. He does not push meds on me because I am not a pill taker.He does not push unneeded tests or proceedures.He is a rarity.
Please take care, Theresa....
Please Take care,Theresa
http://www.antipsychiatry.org/jenelle.htm
It does explain how she got to where she is now.
I am anti drug taking always have been.
Many of my forum buddies who have MS type symptoms take a cocktail of drugs for so many things and a lot of them feel ill all the time, I often wonder if it is the combination of drugs or the actual symptoms of the illness.
They take stuff for pain, muscle spasms, fatique, sleeplessness and so on.
A friend of mine with fibromyalgia started to have hallucinations and ended up in hospital on the verge of death because her pain killing patch had reacted to one of the new drugs she had been given.
The was another girl who has dystonia through the swine flu injection, she can only now walk backwards.
http://www.youtube.com/watch?v=uR5p_bD3uLc
You never know how your body can react to stuff even NATURAL things can cause havoc.
IWANTTOFEEL WELL.
When I heard about Sophia it made me cry no one should be made to suffer the way she did.
Sadly many neurologists still treat ME patients as though they are nuts or time wasters.
Its going to be a long road to change attitudes.
The more we talk about it the more chance we have of it being taken seriously.
Even my neurologist treated M.E. with disdain.
R.I.P Sophiaxxx
It does explain how she got to where she is now.
I am anti drug taking always have been.
Many of my forum buddies who have MS type symptoms take a cocktail of drugs for so many things and a lot of them feel ill all the time, I often wonder if it is the combination of drugs or the actual symptoms of the illness.
They take stuff for pain, muscle spasms, fatique, sleeplessness and so on.
A friend of mine with fibromyalgia started to have hallucinations and ended up in hospital on the verge of death because her pain killing patch had reacted to one of the new drugs she had been given.
The was another girl who has dystonia through the swine flu injection, she can only now walk backwards.
http://www.youtube.com/watch?v=uR5p_bD3uLc
You never know how your body can react to stuff even NATURAL things can cause havoc.
IWANTTOFEEL WELL.
When I heard about Sophia it made me cry no one should be made to suffer the way she did.
Sadly many neurologists still treat ME patients as though they are nuts or time wasters.
Its going to be a long road to change attitudes.
The more we talk about it the more chance we have of it being taken seriously.
Even my neurologist treated M.E. with disdain.
R.I.P Sophiaxxx
Well I would say sometimes over riding legislative reforms can help stop abuses like that. No one can change things overnight but people can advocate for change together. Another interesting story (but also horrific) is "Jenelle's Story". I would post the link to the blog but as the specific website domain went down did the site did and unfortunately the search calls up an anti-psychiatry site (which the person is not associated with). They were given Reglan for food poisoning and developed advanced tardive dyskinesia. As the accompanying psychomoter agitation they experienced (as I do on a daily basis, but less so as treatments have been identified to help it) was confused as psychiatric they were given Thorazine. Now they are a wheelchair user for life. The person themself has taken a healthy and pragmatic approach and is in a graduate university researching treatments for movement disorders. However, the proposed law created around them is not one I agree with as it would severely restrict the use of medications that can cause tardive dyskinesia (which are many medications that can be medically neccessary).
However, my stance is that new treatments (as the Phase II experimental antipsychotic agent I am in clinical study for schizoaffective disorder,) should be researched and developed that don't cause tardive dyskinesia but are as effective (or in the case of NMDA receptor modulate antipsychotics potentially more effective). The criteria they are tenatively identifying in me, tardive psychosis, tardive dysphrenia and tardive dysmentia are considered controversial because they are associated with people who are anti-treatment but my stance is having experienced them they should be identified, treated and prevented.
I would say for myself there may have been some antagonism at first but when psychiatrists and neurologists who were movement disorders specialists as a whole saw that my aim was to help others, not lambast the medical system they began to support it. I do not think that I myself will change anything overnight. I do think the discussion of my specific recovery might potentially markedly help things along the way. Any form of legislation that aims to protect people's rights, identify new neurological disabilities and find treatment for them is always worth supporting. Sometimes having people write letters or emails can make that much of a difference...
However, my stance is that new treatments (as the Phase II experimental antipsychotic agent I am in clinical study for schizoaffective disorder,) should be researched and developed that don't cause tardive dyskinesia but are as effective (or in the case of NMDA receptor modulate antipsychotics potentially more effective). The criteria they are tenatively identifying in me, tardive psychosis, tardive dysphrenia and tardive dysmentia are considered controversial because they are associated with people who are anti-treatment but my stance is having experienced them they should be identified, treated and prevented.
I would say for myself there may have been some antagonism at first but when psychiatrists and neurologists who were movement disorders specialists as a whole saw that my aim was to help others, not lambast the medical system they began to support it. I do not think that I myself will change anything overnight. I do think the discussion of my specific recovery might potentially markedly help things along the way. Any form of legislation that aims to protect people's rights, identify new neurological disabilities and find treatment for them is always worth supporting. Sometimes having people write letters or emails can make that much of a difference...
Wow, that is quite a story. How many more are there that we do not know about? How many suffer in silence???? How many have no advocates? How many just fade away?
Common sense tells us it should not be this way so how can it be?
To anyone not put through the terrible vortex of trying find a diagnosis, it really is difficult to understand how this ever happens, so it is up to those of us who "get it" to try to change it, but how???
There I go, trying to change the world in a day again.
Wanna :o)
Common sense tells us it should not be this way so how can it be?
To anyone not put through the terrible vortex of trying find a diagnosis, it really is difficult to understand how this ever happens, so it is up to those of us who "get it" to try to change it, but how???
There I go, trying to change the world in a day again.
Wanna :o)
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