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

[alex3619]

The way I see it UK government policy is to let the system fail then privatize it. We see the same thing happening here. Once privatized the hospitals have strict budgets and limits, and treatment becomes even more problematic, but its making money for someone.

 

[Kenny Banya]

You definitely got to go to the media about it.
I bet The Guardian or the like would be very interested in your story

 

[SK2018]

Disgusting! Its sad that in a 2005 study on psychopathy by field, surgeons came fifth! (CEO's first - no surprise there)
I wonder how far up the psychopathy ladder do medical practitioners sit. Need to check...
The international comparison reminds me of Michael Moore's 'Sicko' documentary - Americans treated reprehensibly & neglected by their own government & when they visited the big bad wolf of Cuba, they received immediate treatment for a few dollars.

Ironically ,pychciatrists have trusted me and treated me with far more respect than neurologists here in the UK,2 of them already said clearly your symptoms are neurological and most likely some antibody disorder and there is nothing from their side they can do for me,didn't have much effect on that neurologists attitude to me though,I think neurologists tend to be the worse as the nervous system is beyond their limited capability so anything that passes their walls of knowledge they blame it on hysteria and malingering.

 

[SK2018]

@Shawn, I just wrote in a thread that I was lucky that I was given good care by the NHS and after reading your experience I feel quite stupid. I guess NHS has very clear boundaries here in UK.

M.E. is still unproven as a physical disease according to NHS. You only get symptoms treated which is very annoying. I was given good care for the symptoms.

However, as I go along life I guess I lost my health, to me valuable time of my life, I gradually stop working, I lost my fertility, I lost friends, family members are not in touch etc, but symptoms were treated to a degree. And this is as much as you can get.

I don't know what else to say, I feel very sad.

I hope you continue to fight and get a proper cure, not symptom relief and hold on to your health, you are still young. I feel I lost the fight, it is difficult to fight when you're not well.

Lastly, I live and tried private health sources abroad, even within their NHS. I was treated with respect and no one ever wanted to kick a patient. I have never came across this yet. However, in UK I have witnessed this. Not excepting the lack of service here in UK is not excepted, and even physical force is justified somehow. If this is not oppression I don't know what is?

The problem is with antibody mediated neuro immune disorders you don't really get symptom relief,it's either all or nothing ,as if the antibodies are still in there making trouble nothing can mask it

 

[erin]

The problem is with antibody mediated neuro immune disorders you don't really get symptom relief,it's either all or nothing ,as if the antibodies are still in there making trouble nothing can mask it

I'm afraid to say it's nothing... It's just a pretense that they are doing something. People who are involved in this are not aware, they only try to help. It's the system that does not work unfortunately.

 

[Gingergrrl]

The problem is with antibody mediated neuro immune disorders you don't really get symptom relief,it's either all or nothing ,as if the antibodies are still in there making trouble nothing can mask it

@Shawn I am jumping into this thread really late and need to go back and read your original thread which I missed. I am in a similar situation to you in the sense that I have eleven autoantibodies (but not the anti-NMDA one that you have- or I think that is the one you have, please correct me if I am wrong)! My antibodies were identified by Mayo Clinic, Quest, and Cell Trend Labs in Germany.

I tried all kinds of treatments since becoming ill in 2013 but absolutely nothing has helped me to the level that high dose IVIG has and I am certain that it is b/c it is knocking down the autoantibodies by temporarily sponging them up and replacing them with good IgG (from my layman's perspective). I will be doing six months of high dose IVIG. I started back in July with low dose and have built up from 24 grams to 82 grams every three weeks with no issues (but I require a very slow infusion speed for multiple medical reasons).

The problem is that the autoantibodies will keep coming back like you said and continue to make trouble which is why I will likely try RTX at the end of the six months of high dose IVIG to knock out the B cells and hope the new ones grow back antibody free. It was a real struggle to get this approved by my insurance (in the U.S.) and am certain it would not have happened if I were to live in the UK. I am so sorry to hear about your recent experience and am horrified that you were physically assaulted and agree with those who have said that you should report it.

And like you, the Neuro's that I saw have been the worst of the worst. At best they were disinterested or unhelpful and at worst, they throw you under the bus in an attempt to sabotage your treatment of the autoantibodies. My main doctor and my mast cell doctor have both stepped up to help me and I am doing this without a Neuro, including the ongoing cancer monitoring in case one of the autoantibodies is tied to a paraneoplastic syndrome, (which so far it does not appear to be).

I wish you the absolute best and am going to be following your story. Do you consider yourself to have ME/CFS versus a disease without an official name that is autoantibody mediated? Am just curious and there is no right or wrong answer to this question!

 

[JamBob]

Shawn - I'm so sorry you've experienced this frightening situation. When you feel so sick and vulnerable - it's the last thing you need to be mistreated by the people who are supposed to be helping you. I really hope you can get some help whether abroad or at Queen's Square.

I've been going abroad for years now for secondary care for my autoimmune diseases. I found the stress of being dismissed, patronised, condescended to and sometimes abused in medical consultations was actually making me more ill. It's weird when you manage multiple diseases 24/7 and make complex medical management and dosing decisions all day, every day yet doctors talk to you like you are some kind of idiot.

When I go abroad I get care that is responsive and tailored to my individual needs (rather than the box ticking, point scoring, protocol-regurgitating British approach) and my doctor and I have an excellent working relationship based on mutual trust and respect. My doctor actively encourages me to find out as much as I can about my diseases as I was told that "I am the one doing most of the management" whereas in the UK doctors are affronted if you are knowledgeable about your diseases or different treatment options. Plus in consultations we talk on a level about test results and management options whereas in the UK it is all dumbed down and you are treated like anyone who is a patient (and not a doctor) must have a low IQ.

The funding crisis in the NHS can account for some issues (long waiting lists) but I have long held that there is something rotten at the core of British medical culture. If you read British medical trade publications, there is much evidence of the dismissive, superior attitude that doctors hold towards patients. It's not a coincidence that patient-blaming terms like "heartsink" were invented by British doctors - culturally, the British medical profession seem to favour a denigrating approach to working with patients. We also see public evidence of this approach in the way that doctors like the King's/Bristol crowd have treated patients with ME in the media as well as in our individual appointments.

I believe that with the UK system, doctors are paid well regardless of how they treat patients and regardless of the outcomes of their behaviour so there is no incentive for them to behave decently*. Whereas in other countries where patients have a choice of providers, it is up to doctors to show that they are up to the job (otherwise the patient just walks and the money goes with them). I don't want a US system - but I would favour a French or some other continental system where patients have more say in their healthcare and a choice of providers. I also think that the British public needs to start prioritising the funding of healthcare. You can't have a good service if you are only willing to pay for a scrimping service.


* There are of course exceptions - I once had an excellent GP who was really more interested in helping (as opposed to box ticking like her colleagues) and we can see on the forum that Prof Edwards is a thoughtful, intellectually astute and committed doctor who would obviously go out of his way to help people but I think these types of doctors are exceptions rather than the norm.

** With Queen's Square - they are massively oversubscribed in general as a tertiary centre. I had an "urgent" referral there some years ago (when funding was better) and the wait time was 4 months for urgent referrals and 12-18 months for a standard referral as it was the only autonomic centre in the UK at the time. Also you might be referred to a "top name" doctor but when you go you should actively ask to see that consultant as they tend to run their clinics concurrently with their juniors and if you don't ask - you might end up with one of the juniors rather than the experienced doctor.

 

[SK2018]

@Shawn I am jumping into this thread really late and need to go back and read your original thread which I missed. I am in a similar situation to you in the sense that I have eleven autoantibodies (but not the anti-NMDA one that you have- or I think that is the one you have, please correct me if I am wrong)! My antibodies were identified by Mayo Clinic, Quest, and Cell Trend Labs in Germany.

I tried all kinds of treatments since becoming ill in 2013 but absolutely nothing has helped me to the level that high dose IVIG has and I am certain that it is b/c it is knocking down the autoantibodies by temporarily sponging them up and replacing them with good IgG (from my layman's perspective). I will be doing six months of high dose IVIG. I started back in July with low dose and have built up from 24 grams to 82 grams every three weeks with no issues (but I require a very slow infusion speed for multiple medical reasons).

The problem is that the autoantibodies will keep coming back like you said and continue to make trouble which is why I will likely try RTX at the end of the six months of high dose IVIG to knock out the B cells and hope the new ones grow back antibody free. It was a real struggle to get this approved by my insurance (in the U.S.) and am certain it would not have happened if I were to live in the UK. I am so sorry to hear about your recent experience and am horrified that you were physically assaulted and agree with those who have said that you should report it.

And like you, the Neuro's that I saw have been the worst of the worst. At best they were disinterested or unhelpful and at worst, they throw you under the bus in an attempt to sabotage your treatment of the autoantibodies. My main doctor and my mast cell doctor have both stepped up to help me and I am doing this without a Neuro, including the ongoing cancer monitoring in case one of the autoantibodies is tied to a paraneoplastic syndrome, (which so far it does not appear to be).

I wish you the absolute best and am going to be following your story. Do you consider yourself to have ME/CFS versus a disease without an official name that is autoantibody mediated? Am just curious and there is no right or wrong answer to this question!

I was diagnosed with ME before because of many similar symptoms and the fact of my extreme fatigue and getting more sick after exerting too much ,that's probably a sub symptom of the Neuro immune antibody disorder I got,but there are so many subsets of ME and CFS that who knows for sure.

Your story is interesting ,do you remember getting any infections before that all started ?if so which virus ?

Have your viral titres been elevated? Not as a sign of ongoing viral infection but a sign of a humoral immune system in overdrive.

Agree about your opinion on neurologists ,I have been treated way better by psychiatrists as they actually LISTEN to my story carefully and because they do that ALL of them know that I have a clear neurological disorder and not one has said I ever had any sort of mood problems except the natural stress of living with such illness.

I have just finished making the long journey here my body is vibrating like a mobile phone now and headache is worse and feel more sick due to the energy it took to make it here.

No matter what is said ,the bare fact is I was not treated and quickly discharged despite past and current evidence even from their own lab confirming NMDA and instead on some "theory" that its all in my head ,they don't seem to listen to their own psychiatrists when they say it's not ,I think the neurologist Doctor Barry Seemungul has "belief problems" as obviously if Your going against evidence and saying a patient has something without evidence then it's obviously "all in his head" ,I think he should see a psychiatrist to honest.

 

[Gingergrrl]

I was diagnosed with ME before because of many similar symptoms and the fact of my extreme fatigue and getting more sick after exerting too much ,that's probably a sub symptom of the Neuro immune antibody disorder I got,but there are so many subsets of ME and CFS that who knows for sure.

Thanks @Shawn and I was just curious. I don't really have "fatigue" or any symptoms of sickness (no fevers, no flu-like stuff, no sweating, no swollen lymph nodes, no sore throats, etc) so if I do have ME/CFS, we are in different subsets like you said. For me the label is less important now vs. discovering that I have all of these autoantibodies and having improvement from high dose IVIG.

Your story is interesting ,do you remember getting any infections before that all started ?if so which virus ?

I had severe mono (from EBV virus) in 2012 and then ten months later moved into a rental with toxic mold and had severe mycotoxin exposure. I got sick two months after moving into the moldy rental (did not know why) and it was most likely a virus. Have never been "sick" again (since Jan 2013) in the traditional sense.

Was first diagnosed with Hashimoto's, then POTS, then a million other things, but my worst symptoms were shortness of breath and chest pain with exertion or standing/walking (so I have used a wheelchair since Oct 2014). Then early 2015, I developed severe MCAS to the point of getting anaphylaxis to all food but water at that time. It was not until 2016 that I learned I had two rare autoantibodies from Mayo testing (plus the non-rare Hashi's auto abs) and then with the Cell Trend tests, I had 7 of the 9 Auto Abs positive. So I started to view my situation more as an autoimmune disease without a name vs. ME/CFS.

Have your viral titres been elevated? Not as a sign of ongoing viral infection but a sign of a humoral immune system in overdrive.

Yes my viral titers were elevated for several years (for EBV, VZV, HSV 1&2, etc). I also tested positive for one of the coxsackie viruses and one echovirus when I did the ARUP tests but no treatment was offered for this part. Early on I tried Famvir and later attempted Valcyte but these did not help. The mast cell treatments and later the IVIG have been the only things that have really made a difference (in my case).

Agree about your opinion on neurologists ,I have been treated way better by psychiatrists as they actually LISTEN to my story carefully and because they do that ALL of them know that I have a clear neurological disorder and not one has said I ever had any sort of mood problems except the natural stress of living with such illness.

Yes, the Neuro's were/are the worst. I had the same experience and saw an integrative psych at the beginning of my illness and he said, "You are not depressed, you are physically sick". I was desperate to find anything to get better at that time and extremely motivated to return to work and my life (vs. someone depressed). He actually saw how abnormally low my BP was, plus the tachycardia, and all of my autonomic issues. (And this was before I was even using wheelchair or had MCAS or any of the stuff that was to come later)!

I have just finished making the long journey here my body is vibrating like a mobile phone now and headache is worse and feel more sick due to the energy it took to make it here.

Am sorry to hear this and hope you are feeling better soon.

No matter what is said ,the bare fact is I was not treated and quickly discharged despite past and current evidence even from their own lab confirming NMDA and instead on some "theory" that its all in my head ,they don't seem to listen to their own psychiatrists when they say it's not ,I think the neurologist Doctor Barry Seemungul has "belief problems" as obviously if Your going against evidence and saying a patient has something without evidence then it's obviously "all in his head" ,I think he should see a psychiatrist to honest.

I agree it is bizarre that you have anti-NMDA antibodies but the doctors are not taking this seriously. Have you read the book, "The Girl on the 6th Floor"? You are doing what you need to do to get treatment and I admire that and relate to the struggle. I am doing my current treatment without a Neuro but have two amazing doctors on my side (neither are Neuros).

I wanted to answer your questions but don't want to sidetrack your thread! Feel free to PM me if I can be of any further help.

 

[SK2018]

Arrived in Hong Kong just woke up after basically being in bed asleep for almost 24 hours straight,I was totally exhausted and worn out mentally and physically after arrival.

Winter Weather is nice here at around 20c with a pleasant sea breeze and a nice relief from the bitter cold of London
I am staying at Kings Road on HK island near the harbor.

I'll be meeting my Neuro soon and getting a Cyclo and Anti IL 6 course set up my doctor in Shanghai will be arranging a plan for me also so that I can continue things when I get back there,I hope it goes well and stops this getting worse ,not sure how much damage has already been done or what can be reversed or not as long as it can be prevented from getting worse that's ok.

To back up what I said on the original post ,the guidelines say that patients "suspected" of having auto immune cns disorders should be treated BEFORE antibodies results come in ,obviously with a previous diagnosis I had more than just suspicion,in fact the guidelines even say that even with NEGATIVE antibody results a trial of immune therapy can be attempted (obviously I was positive antibodies) so seems like I got a really unfair raw deal there is no excuses for it ,Dr Barry Seemungal obviously does not have my well being in mind and happily stands by as I suffer and get damaged with more financial loss because he thinks I am somatising.

 

[digital dog]

Shawn, how were you with LDN? Did it help with your immunity?

 

[Gingergrrl]

@Shawn Sorry if dumb question, but what are "NSAbs"? I am positive for GAD65 Abs (the other one that you mentioned above) but am unclear what NS Abs are, even after searching Google. What do these refer to?

Will answer your PM as soon as I can (hopefully tomorrow) and am definitely interested in learning more from you and comparing notes!

 

[SK2018]

@Shawn Sorry if dumb question, but what are "NSAbs"? I am positive for GAD65 Abs (the other one that you mentioned above) but am unclear what NS Abs are, even after searching Google. What do these refer to?

Will answer your PM as soon as I can (hopefully tomorrow) and am definitely interested in learning more from you and comparing notes!

Not quite sure actually ,I think it's the non neoplastic ones,I'm feeling less terrible in Hong Kong the closer i get to the equator the less severe my suffering ,strange indeed,must be some odd electro magnetic stuff or other influencial aspects that we don't know about that effect Neuro immune mechanisms..Still feel bad just not terrible like in London

 

[Gingergrrl]

Not quite sure actually ,I think it's the non neoplastic ones

That is interesting and I did not think that they could distinguish if an autoantibody was correlated to a paraneoplastic syndrome/cancer vs. a non-neoplastic version and that this was why they do the cancer checks? In my case the antibody of concern (re: cancer) is the N-type Calcium Ab b/c of it's link to small cell lung cancer (and also to LEMS).
Am so curious if anyone else knows what the NSAbs are? (from your post above).

Still feel bad just not terrible like in London

Am glad you are feeling better!

 

[SK2018]

Just finished my meeting in Hong Kong with my Neuro what a FANTASTIC attitude this guy has ,a million times better than the insultive UK neurologists.

1: He appreciates the fact I know a lot about my condition and thinks it makes team play between patient and Doctor easier and even took my suggestion than doing RTX after Cyclo makes more sense.

2: He trusted me ,wants to help and was disgusted at the way doctors in the UK treated me and never for one moment thought I was making my illness up.

I'm starting my Cyclo on Monday at low 200mg doses and RTX 3 months later ,the plan is to use Cyclo to get rid of plasma b cells and RTX later to get rid of memory B cells,not sure how much I can recover at this stage as I have already took a pounding but it is indeed better late than never.

ASIA respects neuro immune conditions and wants to take on this challenge,the NHS should get classes from these guys they are light years ahead..

Update soon!

Prices :
Cyclo 200mg IV 40 pound
Admission and handling fee 70 pound

RTX 100mg 500 pound
RTX 500 mg 2400 pound.

 

[Gingergrrl]

He appreciates the fact I know a lot about my condition and thinks it makes team play between patient and Doctor easier

@Shawn, my two current doctors who are coordinating my high dose IVIG have this exact attitude and appreciate that I am knowledgeable about my condition and we work as a team. I have never found a Neuro with this attitude. I am sure there must be one that exists (somewhere on planet earth LOL) but I have not found them.

the plan is to use Cyclo to get rid of plasma b cells and RTX later to get rid of memory B cells

Now I need to Google this, but what is the difference (if you or anyone can explain) between plasma b cell and memory b cells? I bolded them in your quote above to make it easier to see. I still plan to Google things from your prior posts (like the "B cell biopsy", etc) and still plan to reply to your PM. Am so behind on everything once again but am learning a great deal from your posts that applies to my situation.

not sure how much I can recover at this stage as I have already took a pounding but it is indeed better late than never.

I want to hold out hope for you (and for me) that it is not too late and these treatments can still be helpful. It sounds like you are doing plasmapheresis and cyclo (vs. me doing high dose IVIG and in about 6 months, RTX) but in both cases, I want to believe that it is not too late to recover. I use the word "recover" or "remission" and will never use the word "cure" b/c I believe (at least in my case) that the problems that I have will be life-long but am hoping to get them all under control. Some are completely controlled now vs. others are intractable and not budging but am hoping they will some day ALL be under control (for both of us)!

 

[SK2018]

@Shawn, my two current doctors who are coordinating my high dose IVIG have this exact attitude and appreciate that I am knowledgeable about my condition and we work as a team. I have never found a Neuro with this attitude. I am sure there must be one that exists (somewhere on planet earth LOL) but I have not found them.



Now I need to Google this, but what is the difference (if you or anyone can explain) between plasma b cell and memory b cells? I bolded them in your quote above to make it easier to see. I still plan to Google things from your prior posts (like the "B cell biopsy", etc) and still plan to reply to your PM. Am so behind on everything once again but am learning a great deal from your posts that applies to my situation.



I want to hold out hope for you (and for me) that it is not too late and these treatments can still be helpful. It sounds like you are doing plasmapheresis and cyclo (vs. me doing high dose IVIG and in about 6 months, RTX) but in both cases, I want to believe that it is not too late to recover. I use the word "recover" or "remission" and will never use the word "cure" b/c I believe (at least in my case) that the problems that I have will be life-long but am hoping to get them all under control. Some are completely controlled now vs. others are intractable and not budging but am hoping they will some day ALL be under control (for both of us)!

Have you had IVIG before ? If so how did it go ?the reason I ask is IVIG caused me immense suffering and some damage as it floods your body with exogenous antibodies and that caused a reaction in my cns due to antibodies vs antibodies reaction,in hindsight I would have been better off taking Rituximab back then instead of IVIG as of course it's an antibody and would create a reaction also but it would most likely be a reaction that's a tad lower than IVIG and because it destroys B cells that produce antibodies the reaction would cancel itself out and at least after suffering through it the source of the problem would be removed,unlike IVIG that just hit the autoantibodies and not B cells thus I effectively suffered in vain,problem is now I am in no state to suffer such a reaction again,I could have at that time but not now so I missed my RTX window.

 

[sb4]

the closer i get to the equator the less severe my suffering

You might find reading Jack Kruses work interesting. He tells everyone to move as close to the equator as possible. Mainly for the sun/better lighting.

 

[Gingergrrl]

Have you had IVIG before ?

Hi @Shawn, I finally got a chance to reply to your PM yesterday (no rush to respond!) but want to answer this question here for everyone in case it is helpful. Yes, I started IVIG back in July 2016 at a low dose of 24 grams (or what would be considered a normal dose for immune deficiency which is not my issue). We slowly increased it to the bottom of the Autoimmune/Neuro dose (55 grams) and now I am almost at the top of the autoimmune dose for my weight. I do 82 grams of IVIG (Gamunex) every 3 weeks in a 3-day split dose (with the option to increase to 110 grams in the future which would be the highest I could go). I will be doing the high-dose IVIG until May/June of this year and it is without question the best, most effective treatment that I have tried since the start of my illness.

I don't want to side-track your thread and happy to explain more via PM. I am still planning to write a very detailed thread re: my entire experience with IVIG but have not had a chance. My next IVIG cycle is at the end of Jan and am hoping to write the thread after that one (in Feb at the very latest). Am having family visit tonight and something always gets in the way of me having a chance to concentrate enough to write it all out but I definitely plan to soon.

ETA: My tentative plan after the six months of high dose IVIG is to do RTX. Whether my insurance agrees with this plan is another story...

 

[kms1990]

Wow you story is intense. I am very sorry for all of your suffering. However, it sounds like you are a fighter and not sitting back while your illness takes hold. I am a firm believer that the people who get better from serious illnesses are the ones who take it into their own hands and partner with their doctors and medical systems to make it happen. Good luck.