Denied treatment in the UK need to leave my country again.

[Ysabelle-S]

Shawn, would it be all right for me to link to your account above (I mean what happened to you)? I'd post it on Twitter. Don't want to do it without your permission.

 

[SK2018]

It's fine.

Shawn, would it be all right for me to link to your account above (I mean what happened to you)? I'd post it on Twitter. Don't want to do it without your permission.

 

[SK2018]

Shawn, would it be all right for me to link to your account above (I mean what happened to you)? I'd post it on Twitter. Don't want to do it without your permission.

The police have a copy of the video from hospital CCTV cameras not sure if I can get a copy or not,really wish somebody had filmed it on a mobile.

 

[Ysabelle-S]

The police have a copy of the video from hospital CCTV cameras not sure if I can get a copy or not,really wish somebody had filmed it on a mobile.

I would think a lawyer could get a copy, though I'm no expert.

 

[A.B.]

On cultural differences... I believe psychoanalysis has much less influence in Asia.

Doctors in Asia might not see somatization and secondary gain everywhere like many of their western colleagues.

 

[Jonathan Edwards]

the delay would be in fact roughly 2 months.

That is unacceptable for sure. When I was working I could bend the rules to ensure people did not wait that sort of time. Unfortunately the rules have become much stricter.

I didn't state in the post that my Rituximab dose was far smaller than the recommended amount as i started to get an IVIG like reaction or hints of one so we stopped

Giving rituximab is a fine art, which needs considerable training on the part of the nurse. Almost all reactions can be avoided with care. Again, I would worry about receiving it somewhere other than a large university centre like Queen Square/UCL.

I was offered an anti depressant actually,

That certainly sounds like muddled management. Starting treatment with an anti-depressant before definitive assessment does not make sense dot me.

I had advance immunologic testing in asia and what it showed was huge activation of all T cell subsets CD8,3,4 NK, they told me this was a non pathogenic protective response , an ongoing attempt to control and eliminate auto antibodies and secreting plasma cells,so that explained my reaction to IVIG as it was targeted similar as other autoantibodies which caused me an acute inflammatory reaction within the CNS further dropping my baseline

To be honest that makes no immunological sense to me, again raising my concern that your Asian physicians actually understand what they are about.

You seem confident I don't have tissue damage is it possible to have tissue damage within the CNS but it not being detectable via MRI? As for the spinal cord I above never had an MRI of it so image no idea about that.

An MRI may not detect everything but if there is tissue damage it is highly likely to show it.

If there is indeed no tissue damage then what in your opinion could account for intermittent symptoms of double Vision ,hearing loss ,vertigo black outs ,unbelievable lethargy and head ataxia which has persisted and rarely lets up

If neurological symptoms are intermittent it is fairly certain there is no structural damage. The problem must be at the physiological level.

In any case it does sound as if you ought to get a definitive assessment sooner than scheduled. The problem we face in all branches of medicine is that the current government seem to be impervious to all the evidence that the system is in free fall. It is not specific to any particular disease. Apparently people with heart attacks and strokes have been lying on trolleys in corridors for 36 hours this week.

 

[justy]

Hi Shawn, I have been following your story with interest and so am horrified to hear this latest awful turn of events. I am so saddened to hear what happened to you, but not surprised ass I have also suffered at the hands of the NHS (not physical abuse I may add).

I can only reiterate what Jonathon Edwards has said - the NHS is in complete freefall - im now to wait 6 months for an urgent apt with a spinal team after the GP and then another consultamnt took three years to find out I actually don't have a bowel disease but an injury with severe chronic inflammation to my coccyx, which means I haven't been able to sit down now for well over two years. It has been a very distressing time on top oif everythimng else. In effect I am only waiting for a trial of a steroid injection - unbelievable that it has taken YEARS to get to this point.

Obviously your situation is more urgemt amd important - but this is now the state of things, and it is not OK.

 

[SK2018]

Hi Shawn, I have been following your story with interest and so am horrified to hear this latest awful turn of events. I am so saddened to hear what happened to you, but not surprised ass I have also suffered at the hands of the NHS (not physical abuse I may add).

I can only reiterate what Jonathon Edwards has said - the NHS is in complete freefall - im now to wait 6 months for an urgent apt with a spinal team after the GP and then another consultamnt took three years to find out I actually don't have a bowel disease but an injury with severe chronic inflammation to my coccyx, which means I haven't been able to sit down now for well over two years. It has been a very distressing time on top oif everythimng else. In effect I am only waiting for a trial of a steroid injection - unbelievable that it has taken YEARS to get to this point.

Obviously your situation is more urgemt amd important - but this is now the state of things, and it is not OK.

I am in the process of booking a flight back to Shanghai,cheapest is Virgin Dreamliner direct 11 hours ,hopefully the flight will have empty seats I can sleep on,I am having breathing difficulties now I feel so unsafe because I feel should anything happen I won't be treated here even Charing Cross put a notice on the system that said I am not to be treated there for this condition,what did I do to deserve this disdain ?i had respect ,value and achievement in Shanghai ,my life meant something and I had a brilliant circle of friends and connections ,now I am a target of distrust ,contempt and mockery,why ?..just because I have a Neuro immune ME like illness with A typical symptoms ,my aim is simply to stay alive ,to spend time with my mother who I have been separated from for a long time,yet I can't ,once again I must drag a heavy suitcase go through the stress of travel just to get a inexpensive low dose of cyclophosphamide to keep myself out of dangerous waters,yes the drug has a 1-2% increased chance of cancer so what ?according to latest studies CT scans can raise the chance of cancer by 20% and I have had 2 of those (regretfully) so what's 1% more ? Most people get some form of cancer in Their life so odds are I would get it sooner or later regardless anyway ,1-2% extra risk is worth it to stop the destruction of my nervous system..I should never have been made to wait a month on false promises ,only to have it canceled at the last minute and kicked out into the wilderness with another months wait for an appointment.

Now the reality checks home ,sufferers here may find their auto antibodies and
Causes, but it won't garuntee treatment ,probally not in the UK anyway,I'll buy travel insurance again,docs in China play ball and usually won't mention it's a previous condition.Fingers crossed.

This is gonna make a great story for the papers here and in esp in China "Sick British man beat up in UK hospital finds refuge in Shanghai medical care" +1 for communist China where doctors trust me and talk to me as the intelligent human being that i am.

If I take the punch out of this flare I may be able to make it back to see Doctor Zandi for a long term plan "if he agrees to do that for me" who knows only ,time will tell.

 

[SK2018]

That is unacceptable for sure. When I was working I could bend the rules to ensure people did not wait that sort of time. Unfortunately the rules have become much stricter.




Giving rituximab is a fine art, which needs considerable training on the part of the nurse. Almost all reactions can be avoided with care. Again, I would worry about receiving it somewhere other than a large university centre like Queen Square/UCL.



That certainly sounds like muddled management. Starting treatment with an anti-depressant before definitive assessment does not make sense dot me.



To be honest that makes no immunological sense to me, again raising my concern that your Asian physicians actually understand what they are about.




An MRI may not detect everything but if there is tissue damage it is highly likely to show it.



If neurological symptoms are intermittent it is fairly certain there is no structural damage. The problem must be at the physiological level.

In any case it does sound as if you ought to get a definitive assessment sooner than scheduled. The problem we face in all branches of medicine is that the current government seem to be impervious to all the evidence that the system is in free fall. It is not specific to any particular disease. Apparently people with heart attacks and strokes have been lying on trolleys in corridors for 36 hours this week.

Yes I also unfortunately heard the news about the 36+hour situation too,sad days indeed.

In your opinion what could be causing my body to not be making antibodies towards HSV 2,? I have had the virus lesion cultured at initial infection,and my system is making IGG antibodies for everything else eg EBV,HSV 1 ect yet HSV 2 on every test is non reactive, is it because it didn't get found in the blood stream or that B cells have malfunctioned and either failed to find it or are ignoring it ?,it stands out strongly as I got ill 2 weeks after this infection and it is presenting an abnormal finding.

It's almost like I got the infection,it failed to be processed,and my immune system went into overdrive afterwards,because after I got ill ALL my IGG titres went up by 10 fold even the good ones.eg before my EBV and HSV 1 titres were 1:30 and 1:20 now and since I got sick EBV is 1:400 and HSV 1:380 yet DNA test for viral DNA are negative so their still dormant.

If antibody production has indeed went into overdrive then would that mean some autoantibodies previously present at non pathogenic levels could become symptomatic as obviously if antibody production is going up by more than 10 fold that would apply too all antibodies including auto ones ?

.

 

[Cohen2]

Damn, I had been looking out for an update from you but wasn't expecting this. I do hope the media picks this up. Keep us updated.

 

[Jonathan Edwards]

In your opinion what could be causing my body to not be making antibodies towards HSV 2,? I have had the virus lesion cultured at initial infection,and my system is making IGG antibodies for everything else eg EBV,HSV 1 ect yet HSV 2 on every test is non reactive, is it because it didn't get found in the blood stream or that B cells have malfunctioned and either failed to find it or are ignoring it ?,it stands out strongly as I got ill 2 weeks after this infection and it is presenting an abnormal finding.

It's almost like I got the infection,it failed to be processed,and my immune system went into overdrive afterwards,because after I got ill ALL my IGG titres went up by 10 fold even the good ones.eg before my EBV and HSV 1 titres were 1:30 and 1:20 now and since I got sick EBV is 1:400 and HSV 1:380 yet DNA test for viral DNA are negative so their still dormant.

If antibody production has indeed went into overdrive then would that mean some autoantibodies previously present at non pathogenic levels could become symptomatic as obviously if antibody production is going up by more than 10 fold that would apply too all antibodies including auto ones ?

.

To be honest Shawn, I do not think any of these titres means anything at all. Viral antibody titre measurements are very rough and ready indicators of the humeral response to a virus. The results can vary from lab to lab and week to week in the same lab. Most of the time these titres are only used to show rises in matched sample pairs in relation to an acute infection. Trying to interpret them in other ways is pretty much a waste of time. HSV is odd in the way it produces antibody responses - something to do with localisation of the antigen I think. But in any case you cannot compare one person's antibody titre with another person's. The titre measures some sort of average of ability of antibodies to bind to an ELISA plate or some other artificial system. Some people may have very small amounts of very powerful neutralising antibodies and others may have huge amounts of rather feeble neutralising antibody.

In short I don't think any of this stuff on viral titres has anything useful to tell us about ME. And I cannot see that it has anything to do with autoimmunity, since we have no reason to think there is any cross talk between responses to viruses and autoimmune responses.

I am afraid there is just as much immunobabble as psychobabble around.

 

[Cohen2]

@Jonathan Edwards so do you think Shawn is producing antibodies to hsv? I had the same problem with Igg and Igm not showing on testing at all for years after I had glandular fever. Could the testing have missed ebv antibodies? cheers

 

[chipmunk1]

MRI showed mild cortical swelling.... but they do know that there is nothing wrong.

 

[Jonathan Edwards]

@Jonathan Edwards so do you think Shawn is producing antibodies to hsv? I had the same problem with Igg and Igm not showing on testing at all for years after I had glandular fever. Could the testing have missed ebv antibodies? cheers

I really don;t think it matters. As I indicated, these tests are chiefly used to look for changes over short period of time within individuals to try to diagnose an acute illness. There is such huge variation in how people's antibodies behave that more general interpretation is pretty meaningless.

 

[Jenny TipsforME]

@Shawn I'm angry to read how you have been treated Definitely get advice before going to the press if you are also taking legal action about the assault (to avoid jeopardising it). Sometimes I wonder if we need a joint legal pot of money, a pwme union!

Experiences of ME in the UK can make seeking medical care nerve wracking (which obviously doesn't help the misperception that we're unbalanced). Three things cause me tachycardia on my heart rate monitor: standing (POTS), spiders and contact with doctors (doctors testing for POTS compounds the effect!).

I thought my hospital visit re paralysis was bad, but at least they just didn't treat me, I didn't get physically assaulted and thrown out. I would however have been better off just staying home unable to move.

I've got a neurology appointment soon and I'm nervous I'll be worse off for having been to it (being given some Functional label or something). Also the dynamic of letting on what you know is tricky as you've found out. I did do some neuro at uni. Do I need to drop this in before I start asking about neuromuscular junction issues etc as if it's purely googled? We don't want to waste the appointments by not letting on what we're thinking about (really I have a list of conditions I'd like him to properly rule out, as well as genuinely wanting to know what he makes of my symptoms). If you just list the relevant symptoms it doesn't work because either they see it as a hypochondriac thing or they miss the hinted at condition.

On another thread about the state of U.K. treatment someone (@trishrhymes ?) said they'd been told they were first patient in 10 years to have read a research paper. That got me thinking. I read research papers but I don't generally tell doctors that I do. I suspect there are other patients too nervous to reveal knowledge. Isn't this all bizarre? I do prepare typed notes for appointments. This is an accessibility thing - my thinking now lying down in the afternoon will be a lot better than sitting upright in a morning appointment - but I suspect this is viewed as odd patient behaviour.

Anyway @Shawn I find you brave traveling the world in search of better treatment but I hope you can get there here at home. It sounds like you've been referred to the main man.

 

[erin]

@Shawn
It is unacceptable the way you've been treated here in UK . I hope you find the right treatment in China, best of luck.

 

[SK2018]

@Shawn
It is unacceptable the way you've been treated here in UK . I hope you find the right treatment in China, best of luck.

Already got my flight booked to Hong Kong hope I make it ok ,getting really bad these days,i really hope they have 3 seats spare so I can lay down through an 11 hour flight.
My Neuro in HK will prescribe a proper autoimmune course of Cyclo or RTX.Sadly cash reserves are getting into the red, basically alll the savings I worked hard for are now ruined on flights and running around that shouldn't need to happen.
This should make an interesting book that I plan to write when this is all over ,which will encompass "world travel" ,abuse ,rejection ,pain ,fear ,immense suffering and Financial and emotional ruin all in one.I Hope it will help the cause of everyone here on PR.

 

[SK2018]

That is unacceptable for sure. When I was working I could bend the rules to ensure people did not wait that sort of time. Unfortunately the rules have become much stricter.




Giving rituximab is a fine art, which needs considerable training on the part of the nurse. Almost all reactions can be avoided with care. Again, I would worry about receiving it somewhere other than a large university centre like Queen Square/UCL.



That certainly sounds like muddled management. Starting treatment with an anti-depressant before definitive assessment does not make sense dot me.



To be honest that makes no immunological sense to me, again raising my concern that your Asian physicians actually understand what they are about.




An MRI may not detect everything but if there is tissue damage it is highly likely to show it.



If neurological symptoms are intermittent it is fairly certain there is no structural damage. The problem must be at the physiological level.

In any case it does sound as if you ought to get a definitive assessment sooner than scheduled. The problem we face in all branches of medicine is that the current government seem to be impervious to all the evidence that the system is in free fall. It is not specific to any particular disease. Apparently people with heart attacks and strokes have been lying on trolleys in corridors for 36 hours this week.

Your skeptical about the T cell response theory that i was told before although testing reveals such cell elevations after the strong response hit me,and aren't T cells esp T regs known to attack B cells that have gone rouge ? Such examples
Being T cell destruction of B lymphoma cells ,one thing I am sure of is there is a counter force response going on in some cases when symptoms get too bad suddenly I'll get a response which I know by cocomitantly getting swollen nodes ,headache ,feeling feverish and night sweats and shaky then the symptom that was getting too serious will be relieved,of course this response is damaging also,now if this being T cell mediated in your opinion makes no sense what could it be? Antibodies against antibodies ? Good B cells doing their part ?i know immunology is very complex ,the feeling I got from IVIG was the same as these responses but far far more severe and IVIG are antibodies,so what is possible in regards to this ?

How can I be sure it's an immune response ?well during my beginning phase of My illness after I started to black out and failed to breathe easily I was hit by a massive response that had elements of GBS in it as it made my legs and muscles weak and stiff also and I felt it move like a wave through my whole body accompanied by high fever,my breathing got easier a few days after that.So there is definitely a counter force going on.Again my CSF was normal except for auto antibodies and there was no sign of bacterial or viral antigens and they tested a lot even entero ,cocksackie TB ect

 

[Jenny TipsforME]

I mentioned above that perhaps we could use a legal fund then today someone shared this https://www.gofundme.com/mecfs-legal-resources?rcid=9ed7633c470a48ca8d49d9578c628cea

At the moment no one has donated. This seems a bit odd. If I was setting up something like that I'd coordinate a few friends to donate to start it rolling. Is it credible? Either way it won't help @Shawn at the moment because there's no money in the pot. There's a pot for reimbursing Karina Hansen's legal expenses http://let-me.be/page.php?11 but this is specific for her.

In terms of the immunobabble issue I find this harder to navigate than psychobabble, especially as it isn't all babbling.

 

[SK2018]

Beating on sick people when you know they are sick is a hate crime. The media and police may both be interested. Its a shame you were not in a state to report it immediately.

The U.K.is one of the few places where Neuro immune disease sufferers specifically seem to get neglected and abused more than anywhere else,I wonder what it is about Neuro immune diseases and the U.K. that elicits such disdain.?...
I agree with your comment before that "Functional" neurological symptoms is Latin for "your imagining it all" or "conversion disorder" ,but to try and slap that on me behind medical code terms such as "non organic" ect despite the fact I had an abrupt onset and auto antibodies in my CSF and serum is frankly taking things to new realms of oppression,this needs to change ,I'll be contacting The Guardian and BBC health desk and meeting journalists to discuss publishing this story.
Also I will be starting a social media ad campaign soon that I will fund myself to reach out to the masses about what's going on.I come from an online marketing background so they are frankly barking up the wrong tree.
I'm down but I'm not out i forgive but I don't forget and this shall all be done once I have recouped enough energy.
Yes because we all know Lynn Gilderdale imagined her "functional" multi organ failure and death.