SK2018
SK
- Messages
- 239
- Location
- Asia wide + UK
Well actually the title is not exaggerated it's effectively the reality...Before reading this remember no matter how much abuse you take ,your illness is real and it's NOT your fault and you DO deserve the same treatment and respect as suffers of other illnesses.
The U.K. Seems to be unique in the fact that it neglects and disdains people's with rare Neuro immune illnesses.
You might remember before I wrote a thread talking about how my ME like
Syndrome started and how i found the underlying cause of it, if you want to see that one search "NMDA antibodies CFS cause" on PR I'm sure it will come up.
Medically been treated well in Asia and Esp in Taiwan,I had full plasmapheresis and a very small infusion of Rituximab finally I had some relief ,a VERY noticeable relief albeit temporary.Symptoms started to return after 2 months but no point to worry because now I had a diagnosis with testable verified auto antibodies in my serum and CSF in the UK so I would be taken care of right ? Yeah great ,so I bought a 400 pound ticket and went back to London sleeping in pain on 3 seats aboard a Virgin Dreamliner for a long 12 hour flight.
Sadly I was to discover that the UK makes communist countries in Asia look like a heaven of trust and empathy In comparison for people with Neuro immune disease such as ME,in short I was,doubted ,delayed mocked and wait for it ....punched,yes that's not a typo i did say erm..."punched" so here's how it happened.
After arriving at Heathrow and feeling crap with vertigo and terrible lethargy I was taken to Charing Cross hospital,Intially all was fine but despite showing them a wealth of documentation with CSF and serum samples from Asia showing anti NMDA and anti CA positivity and above all documented response to previous immune therapy and even though the guidelines say patients that are suspected of having an Autoimmune encephalopathy and no other causes can be found should be treated on suspicion before antibody results come back ,well even though I had all the "verifiable" evidence and past treatment history ect I was still asked to wait ,a week later I suffered another acute immune attack and huge fatigue + blurred vision swept in I went back again got re admitted ,this time they promised to Quote "treat it aggressively" if antibodies from Oxford come back positive and that it would be a "3 week wait".
I was also reminded 2 times via email by my doctor there to "not leave London" as they had arranged PLEX for me and a special nurse from Oxford is coming over specially to administer it to me.Frustrated by the delay (which happened only because they didn't trust my illness was real) and regardless of worry about further deterioration I said ok fine.So after spending 500 pound on those "life in London" expenses "not wise" when you can't work esp when that money can go 5 times further in Asia
finally my plasmapheresis day arrives on January 3,yay! ,sadly my case Doctor Dr Barry Seemungal who had never spent more than 10 minutes with me since first admission and never bothered to hear my account of my disease process and seemed to think I was "depressed" even though the pysch said I wasn't ,abruptly canceled my treatment 2 HOURS before it was due and ordered me to be discharged within a few hours.I was very upset about this and protested in a non abusive polite yet emotional and slightly loud fashion.
I was told I had to be out of the ward by 4pm ,security came as I was taking too long with things ,..naturally since I was dizzy and fatigued I told the guards to back off and I won't leave until I get all my bags ready ,at this moment the Caucasian security guard took my bag (which contained expensive Nikon lenses) and threw it down hard outside the door,and physically dragged me out of the ward,and with me still in my ward trousers pushed me up against the wall hard 2 times and punched me in the back which caused me to jerk forward and hit my forehead on the wall,(all was caught on CCTV) I was shaking and having palpitations at that time due to the stress and shock of it all which aggravated my underlying illness,I was verbally abused by the guard and told I'm an A^*%hole ,and that I should "stop pretending to be ill" I found this VERY insulting and I have never ever been treated this way by any doctor or guard in Asia and I have never ever pretented to be sick,nor has anyone else here on PR no doubt.I have evidence of my illness and besides what's the motivation to do that?....for me zero.
They made an appointment a month later for me with a specialist(who is actually a friend of the Doctor that treated me bad and most likely will side with him later anyway) (now it's a total 2 months wait) as I don't have time to waste to further deteriorate i reminded them what the international AE guidelines state that these flares should be treated urgently or long term CNS damage or dysfunction can occur,it made no difference sadly.
If they had refused treatment at first it would have been bad ,but to ask me to wait 3 weeks with false promises of aggressive treatment only to cancel it "2 hours" before it was meant to happen is utterly unprofessional and frankly disgraceful esp when the cancellation was based on mistrust of my symptoms,in essence it's indirectly calling me a liar,although they use code language to express that.
The Case Doctor who had spent a total of only 10 minutes with me since I was admitted overuled the plan of the other Doctors who wanted me to have PLEX and possibly RTX after it, Dr Seemungul despite his own phych Doctor saying I DO NOT have any sort of mood disorder or phych issues and despite positive Oxford NMDA serology and recent verifiable CSF serology and symptoms that simply CANT be imagined he still doesn't take my disease seriously ,now i have to get my solicitor involved and leave the country and return to Asia where they A: believe me B:care enough to listen C:don't call me a liar D:think outside the box and E;actually treat and help me. It's NOT my fault i am ill,and it's NOT my fault that my B cells turned against me.
People with ME /CFS and similar Neuro immune syndromes no matter their subset of ME are treated like malingering scoundrels in the UK ,and if you accept CBT you are in effect admitting it is actually "all in your head" and promoting this system,don't insult yourself ,you deserve better ,don't make the deaths and abuse of people such as Lynn Gilderdale and many other ME sufferers be in vain,be savvy and use your computers and social media ,buy cheap Facebook ads,target them to a audience and location and share your stories of abuse and mis treatment ,share your suffering ,videos of verbal or physical wrong doing or recordings of insulting conversations with doctors ect,show the world what you suffer and go through.
You are on PR you have the energy ,use the tools wisely ,20 pound can buy up to 50k targeted views in a location of your choice on Facebook,that's 50k more people know the reality ,imagine if everyone here did that ,how many members on PR X 50k views ! That alone could raise a massive amount of REAL awareness about ME as well as the truth of how people with ME and similar Neuro immune diseases are treated and how they suffer aswell as raising traffic for Phoenix Rising.
I have suffered horrendous neglect since I got sick ,if I had not fought hard frankly speaking I would most likely be dead by now ,I have slept on the floor on a plane for 12 hours as I was too sick to sit up right for more than 2 hours without blacking out ,I have been called a liar ,depressed ,a hypochondriac all of it ,tears have fell ,relationships lost,savings gone ,career frozen ,the happiness of life gone to be replaced by a new form of "existence".
No matter what way this situation is looked at the fact is ,I was left without treatment for a further 2 months because the NHS doctors at CC did not believe I had the illness that I was previously diagnosed with despite having serum and CSF evidence and above all despite responses to past immune treatment.Without evidence for anything else they effectively accused me of malingering,and being depressed or having "Functional" symptoms which is code for pyschogenic,without any evidence from even their own side of course you would think a doctor would have listened to my account of how this all started and the background....? if they did they would likely understand this was clearly abrupt and virally instigated and highly suspicious of being immune mediated even "before" evidence supported it.
For anyone interested I have attached my discharge summary to this thread.
Note at the beginning how it says "non organic" ataxia ,non organic is Latin for "its all in your head" so excuse me if I don't feel insulted that as a respected successful individual with a good life in Asia I am suddenly treated with disdain after being subjected to immense suffering and financial loss.
Shawn
Facebook: http://tinyurl.com/gu8fqy7
The U.K. Seems to be unique in the fact that it neglects and disdains people's with rare Neuro immune illnesses.
You might remember before I wrote a thread talking about how my ME like
Syndrome started and how i found the underlying cause of it, if you want to see that one search "NMDA antibodies CFS cause" on PR I'm sure it will come up.
Medically been treated well in Asia and Esp in Taiwan,I had full plasmapheresis and a very small infusion of Rituximab finally I had some relief ,a VERY noticeable relief albeit temporary.Symptoms started to return after 2 months but no point to worry because now I had a diagnosis with testable verified auto antibodies in my serum and CSF in the UK so I would be taken care of right ? Yeah great ,so I bought a 400 pound ticket and went back to London sleeping in pain on 3 seats aboard a Virgin Dreamliner for a long 12 hour flight.
Sadly I was to discover that the UK makes communist countries in Asia look like a heaven of trust and empathy In comparison for people with Neuro immune disease such as ME,in short I was,doubted ,delayed mocked and wait for it ....punched,yes that's not a typo i did say erm..."punched" so here's how it happened.
After arriving at Heathrow and feeling crap with vertigo and terrible lethargy I was taken to Charing Cross hospital,Intially all was fine but despite showing them a wealth of documentation with CSF and serum samples from Asia showing anti NMDA and anti CA positivity and above all documented response to previous immune therapy and even though the guidelines say patients that are suspected of having an Autoimmune encephalopathy and no other causes can be found should be treated on suspicion before antibody results come back ,well even though I had all the "verifiable" evidence and past treatment history ect I was still asked to wait ,a week later I suffered another acute immune attack and huge fatigue + blurred vision swept in I went back again got re admitted ,this time they promised to Quote "treat it aggressively" if antibodies from Oxford come back positive and that it would be a "3 week wait".
I was also reminded 2 times via email by my doctor there to "not leave London" as they had arranged PLEX for me and a special nurse from Oxford is coming over specially to administer it to me.Frustrated by the delay (which happened only because they didn't trust my illness was real) and regardless of worry about further deterioration I said ok fine.So after spending 500 pound on those "life in London" expenses "not wise" when you can't work esp when that money can go 5 times further in Asia
finally my plasmapheresis day arrives on January 3,yay! ,sadly my case Doctor Dr Barry Seemungal who had never spent more than 10 minutes with me since first admission and never bothered to hear my account of my disease process and seemed to think I was "depressed" even though the pysch said I wasn't ,abruptly canceled my treatment 2 HOURS before it was due and ordered me to be discharged within a few hours.I was very upset about this and protested in a non abusive polite yet emotional and slightly loud fashion.
I was told I had to be out of the ward by 4pm ,security came as I was taking too long with things ,..naturally since I was dizzy and fatigued I told the guards to back off and I won't leave until I get all my bags ready ,at this moment the Caucasian security guard took my bag (which contained expensive Nikon lenses) and threw it down hard outside the door,and physically dragged me out of the ward,and with me still in my ward trousers pushed me up against the wall hard 2 times and punched me in the back which caused me to jerk forward and hit my forehead on the wall,(all was caught on CCTV) I was shaking and having palpitations at that time due to the stress and shock of it all which aggravated my underlying illness,I was verbally abused by the guard and told I'm an A^*%hole ,and that I should "stop pretending to be ill" I found this VERY insulting and I have never ever been treated this way by any doctor or guard in Asia and I have never ever pretented to be sick,nor has anyone else here on PR no doubt.I have evidence of my illness and besides what's the motivation to do that?....for me zero.
They made an appointment a month later for me with a specialist(who is actually a friend of the Doctor that treated me bad and most likely will side with him later anyway) (now it's a total 2 months wait) as I don't have time to waste to further deteriorate i reminded them what the international AE guidelines state that these flares should be treated urgently or long term CNS damage or dysfunction can occur,it made no difference sadly.
If they had refused treatment at first it would have been bad ,but to ask me to wait 3 weeks with false promises of aggressive treatment only to cancel it "2 hours" before it was meant to happen is utterly unprofessional and frankly disgraceful esp when the cancellation was based on mistrust of my symptoms,in essence it's indirectly calling me a liar,although they use code language to express that.
The Case Doctor who had spent a total of only 10 minutes with me since I was admitted overuled the plan of the other Doctors who wanted me to have PLEX and possibly RTX after it, Dr Seemungul despite his own phych Doctor saying I DO NOT have any sort of mood disorder or phych issues and despite positive Oxford NMDA serology and recent verifiable CSF serology and symptoms that simply CANT be imagined he still doesn't take my disease seriously ,now i have to get my solicitor involved and leave the country and return to Asia where they A: believe me B:care enough to listen C:don't call me a liar D:think outside the box and E;actually treat and help me. It's NOT my fault i am ill,and it's NOT my fault that my B cells turned against me.
People with ME /CFS and similar Neuro immune syndromes no matter their subset of ME are treated like malingering scoundrels in the UK ,and if you accept CBT you are in effect admitting it is actually "all in your head" and promoting this system,don't insult yourself ,you deserve better ,don't make the deaths and abuse of people such as Lynn Gilderdale and many other ME sufferers be in vain,be savvy and use your computers and social media ,buy cheap Facebook ads,target them to a audience and location and share your stories of abuse and mis treatment ,share your suffering ,videos of verbal or physical wrong doing or recordings of insulting conversations with doctors ect,show the world what you suffer and go through.
You are on PR you have the energy ,use the tools wisely ,20 pound can buy up to 50k targeted views in a location of your choice on Facebook,that's 50k more people know the reality ,imagine if everyone here did that ,how many members on PR X 50k views ! That alone could raise a massive amount of REAL awareness about ME as well as the truth of how people with ME and similar Neuro immune diseases are treated and how they suffer aswell as raising traffic for Phoenix Rising.
I have suffered horrendous neglect since I got sick ,if I had not fought hard frankly speaking I would most likely be dead by now ,I have slept on the floor on a plane for 12 hours as I was too sick to sit up right for more than 2 hours without blacking out ,I have been called a liar ,depressed ,a hypochondriac all of it ,tears have fell ,relationships lost,savings gone ,career frozen ,the happiness of life gone to be replaced by a new form of "existence".
No matter what way this situation is looked at the fact is ,I was left without treatment for a further 2 months because the NHS doctors at CC did not believe I had the illness that I was previously diagnosed with despite having serum and CSF evidence and above all despite responses to past immune treatment.Without evidence for anything else they effectively accused me of malingering,and being depressed or having "Functional" symptoms which is code for pyschogenic,without any evidence from even their own side of course you would think a doctor would have listened to my account of how this all started and the background....? if they did they would likely understand this was clearly abrupt and virally instigated and highly suspicious of being immune mediated even "before" evidence supported it.
For anyone interested I have attached my discharge summary to this thread.
Note at the beginning how it says "non organic" ataxia ,non organic is Latin for "its all in your head" so excuse me if I don't feel insulted that as a respected successful individual with a good life in Asia I am suddenly treated with disdain after being subjected to immense suffering and financial loss.
Shawn
Facebook: http://tinyurl.com/gu8fqy7
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