I apologise first,as this will likely be a rant, but I am still so upset I just have to share my experience of this morning.
I was diagnosed finally after decades of suffering by an excellent Rheumatologist as having Seronegative Sjogrens and possibly Lupus eighteen months ago and put on Depot Medrol Injections plus oral steroids when needed. This has given me some life at last, but when the injections wear off I am pretty bad again and the plan is to try Micophenolate next after the summer when I have three close family weddings to get through!
I visited my GP this morning to report on a great improvement following my large Depot injection last week and some tablets for the angina I get, but what followed was nothing but appalling!!!
I still can't quite believe it, maybe she was menopausal or having a breakdown!!!
My old GP retired last year after fifteen years of giving me wonderful care and sympathy despite no definitive diagnosis,but he was alone In the practice as being the only one who could actually think out of the box! Now the head of the practice is totally against all drugs, in fact people call him "Dr Paracetamol" as that is all he gives out. I also know three people who died under his care when bowel cancer was ignored as IBS and heart issues put down to stress resulting in sudden cardiac arrests , both fatal. I go to the woman under him, who has always tried to be pleasant but is under his thumb.
I innocently started to tell her I was a wee bit better when she started a shouting tirade about all my recent blood tests being normal so there was no way I should be taking strong drugs like steroids. After the summer we have to get you off "all that stuff" she shouted. I kept my cool, despite tears not far off and mentioned both the professors I see in Glasgow (I also have sphincter of Oddi dysfunction and pancreatitis) were happy with my treatment but no, she said she did not believe in seronegativity no matter what they said. My bloods were normal so I was well, and made me feel like an attention seeker and total freak who enjoyed taking all the drugs I have been on over the last thirty years, most of which helped me.
I tried to tell her I did not "like" having to take any drugs at all by choice but was ignored while she raved at me and showed me the door after my allotted seven minutes asking I get a cholesterol blood test as the only one not yet done.
I managed to get out ,then stunned went for a cuppa to the bookshop and dripped tears into my cup hoping no one would notice.I actually felt assaulted which must sound crazy ,but in the last few weeks until the injection last week I actually was so miserable that I was looking forward to being dead so I wouldn't feel so utterly tired any more nor have to take morphine every day. I am not usually a person who suffers depression but my goodness what a way to treat a patient!
I actually dread getting blood tests now as I know the reaction I will get when they are normal - I will be a freak, someone who makes a hobby of being ill all this life and spends all their waking hours looking up ailments in the Internet for fun!!
I have decided never to go back again and will seek out another practice where hopefully there will be some normal and hopefully human doctors!I have been there for over thirty years but the old good ones have all gone.
I am also seeing my good Professors again next week and seek their advice for help in the long term.
So sorry to off load all this, but now after two diazapan I feel less weepy and more able to cope, had a good cry when I got home, but had to stop as poor dog got upset with me upset and hubby was all set to storm in to the surgery looking for a heads to chop!!! He is going to leave the practice as well !
Thanks for listening if you have got this far!!!!
And thanks for this wonderful place to offload the agony! You just feel so alone, betrayed , angry and miserable and those so called health professionals just have no clue, do they?
C xx
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No one should have to put up with that kind of treatment. Good decision to leave the practice. We know our own bodies and a good doctor would listen. Stay strong and I hope your next GP has a shred more humanity than the so called professional who behaved appallingly towards you. x
Sorry to read your story and hear how upset this has made you. I can relate too. In fact I posted something similar last August, when the GP I saw reduced me to angry / frustrated tears in front of my then 6 year old daughter. He argued about what my consultant had told me etc etc. I never went back. I changed to another surgery, which is a longer drive, but so far very much worth it. GPs have no right to make us feel that way. Why did they become doctors if they have so much anger at patients? What about compassion and understanding. Good luck.
Thanks so much Grannyjogger and Wendy , indeed you wonder why they ever became doctors at all! To be honest I don't think I will be the first or the last to jump ship from this practice when I see what is happening now!!
They cause such harm and if I were alone and without support it could be so distressing for some people to cope with. At least I was able to share it,which helps so much, xx
Read your previous post Wendy, awful to have made you feel that way in front of your wee one too!! Just no excuse at all!!!! We just have to move on somehow and be kind to ourselves, we didn't ask for any of this. Xx
I here ya ...same thing here....had a doctor tell me my bloods were all good (because they r in the range, even if on the extreme end), and I am fine. I am tired of it. Even my husband said why r u looking for something wrong with you. I reply with, because I know my body, and I don't feel well, and I am tired all the time. People keep telling me it's just aging. I don't go to the dr anymore. I do my own research on myself, and treat naturally. I talk to vitamin specialists and nutritionists. Drs are only good for emergency surgeries with organ involvement or car accidents in my opinion. I have walked out of many an offices crying because of drs being so inconsiderate and flat out jerks! So sorry for your troubles. Hope you can find a new office that will understand.
So understand where you are coming from. I too try to do what I can to help myself In other ways .I went to a nutritionist who said my B12 levels were dangerously low due to my malabsorption issues and only just within the UK bottom accepted level of 211, this guy was also a medical doctor and highly respected . He said in Japan the very lowest accepted level was 500 and those over 60 should never be less than that and he wrote to my GP, this same woman, asking her to give me a supplement.
She did a flakey then too, shouting at me that we didn't live in Japan who did he think he was going against the British guidelines. I have since read so much more and B12 levels in this country among the elderly are a disgrace and poor levels can frequently be misdiagnosed as dementia.
Since then I use a b12 patch that I buy on the Internet advised by that nutritionist.
I just thought my woman GP was having an off day that time , but here we go again, so enough is enough, I am deserting them now.
Head of practice also is the worst ever, basically assumes everyone is a hypochondriac till proved otherwise, that is why some of my friends are dead!!!
Sounds a bit dramatic , but sadly true, and as his influence becomes more to the fore now he is head, that practice Is doomed!!!!
I had been sleeping all night since my steroid injection last week but here I am wide awake at 4 in the morning with everything flaring again because of all this. Trouble is any upset and it makes it all worse, at least I feel so angry now and no tears any more and it is as well I am ready now to leave the practice which I should have done months ago after my wonderful GP retired.
Ugh, I think we all have variations of this. My current GP is nice enough but he has a raging phobia against pain medication. Even tough he didn't even know what my current medication was till I showed him the leaflet he refuses to give me pain relief as he thinks the medication should cure me (leaflet itself clearly stated I would still need pain relief). Apparently ZOMGADDICTIONMAYBE is more worrisome than the fact I am going to have an illness for life and will always need pain medication.
I don't know if there is anyone you can complain to about a dangerous doctor but I would look into it. I know that sort of thing makes people want to not get involved but if it doesn't get reported he may end up killing more people....
I wish you luck finding a new GP. Your profs may even be able to recommend someone.
Quite awful to be declined pain medication like that. It is almost a form of abuse .When people have to take strong medication for pain they never become addicted,you just have to reduce the dose slowly as the body gets used to not having it. Thank goodness I have attended a pain clinic at a local hospital for fifteen years and they sort out that for me.
I hope you got the relief you needed, thanks for replying C xx
A few years ago I had a similar experience to you and I felt I'd been assaulted!. I think your GP like mine was having a very bad day but there's no excuse to take it out on Poorly people!. You are doing the right thing going to a different surgery and I hope you find a really great doctor who is supportive of the Mycophenolate Plan. This drug is very effective and better toletated than other immunosuppressives
I honestly don't know how I would be feeling if I did not have the supportive Rheumatologist who is willing to help despite the negative bloods.
Despite being in Scotland I think I would be crawling down to St Thomas's in London!!!!
We have a specialist Rheumatology unit in Glasgow Royal but that is where the old Rheumatologist was who was useless for five years. I don't know if any of them there would treat people with negative bloods since he wouldn't- and they tend to stick together!
Anyway, thanks for giving me hope about the Mycophenolate too! C xx
It took me a long time to get over the experience of being yelled at and I'm wary still!. It will for you, as if we don't have enough to cope with!. Thank goodness you have a good Rheumy, that's so importantt!. Keep us posted about finding a new GP, hope it's a much better practice.X
Thanks for your words of support Misty, yes it does take a while to get over that treatment from a so called health professional. Initially it is tears, then the anger sets in, then you start to doubt yourself and wonder if your trusted Rheumatologist has written them a secret letter saying he actually thinks you are bats and they must take you off all drugs , so you actually start getting paranoid yourself!!!!
Then, you remember, two other times in the last six months this same GP lost the rag, each time because a consultant was asking her to give me , the first time liquid food as I had malapsorption from the pancreatitis, and the second time a B12 Supplement as he thought I was dangerously low and they had missed it.
She is definitely the one with the problem, and I am so glad I see my biliary consultant next week, who is also a friend of the Rheumatologist I see. Last time he said, you have such an interesting case we are always discussing you and thinking how best to treat it. He will be delighted I am eating again after my steroid injection, is a real gentleman,and I come away always with hope and feeling positive for the future.
So this morning I feel so much brighter thanks to all the wisdom and supportI have received from you all.
Good luck for your appointment next week. I've got a similar Gastroenterolgy Consultant who is so supportive and I'm seeing him this week!. How have you got on with B12 medication?. X
Glad to hear you have a good gastroenterologist too, a positive doctor gives as much psychological support as any drug, if not more !
As to the B12, since horrid GP would not give me it, the consultant suggested I bought it online, patches of Methylcobalamin 1,000.I got it easily and not too expensive.You put on one every five days for 24 hours.
I did notice a massive difference in my concentration levels, memory and even fatigue.I have been using them for over a month now.
The consultant said the UK base levels were far too low at 211, my level was 214. He said no one over 60( I am 61) should be less than 500 or neurological problems can occur and often it is mistaken for dementia. This brain affect can be permanent if it goes on for long enough.
He said in Japan the base level was 500 up to 1300 at max. And a scandal it was not recognised in UK.
When I told this to my GP she threw her hands in the air and said" But we don't live in Japan!"
At that point I thought how did she ever become a doctor, or is she low in B12 ?!!!!!
Anyway, thank goodness there are some good doctors out there or we are all doomed!
Good luck with your own appointment,hope all goes well. C xx
Thanks for helpful B12 info.,Comes to something when you've had to buy off the Internet to get the right treatment!. Glad you it's made a difference, so agree with you that thank goodness there are decent docs who went into medicine for the right reasons!. How is your quest for a new GP going?. Good luckX
Am trying to ask around all my friends in the town to find the best one for us.I meet with my super Prof in Glasgow tomorrow and will ask his advice too.
I have my eye on one with about six well experienced Gps , our own one used to be the best in town when we joined over thirty years ago, now there are only three full time and a couple of registrars. Basically that is
hopeless and dangerous head of practice, hysterical woman,and other bullied minions!!!
Will let you know how I get on.
Take care ,and hope you get your B12 sorted out. C x
Good luck for tomorrow. My appointment is Friday. That different surgery sounds much better, hope u get in. Your one should be closest down!. X
hi I am so sorry for what you have put up with.can totally relate to you.your comment about bloods and the internet too.wouldnt have to try and find answers if gps accepted what we tell them and not just investigate one option.all my bloods scans etc they say are normal but ,knowing my body,i know its not.not everything shows up in scans/xrays.so glad that you are able to register somewhere else.my surgery has only two of the six original gps left due to retirement and the women drs starting families and I dont have another surgery I can register at.
hope your new surgery has better gps who are more understanding and have some compassion,care for you.good luck
Appreciate your support and sorry to hear you are stuck in a situation of being unable to change your surgery.I am lucky I am in a small town where we have a few to chose from. All the best, C xx
So sorry you had to experience this from your GP. I had a very similar experience with the consultant at my hospital. I would not have treated a dog like he treated me and clearly upset my wife. Fortunately he has been put on Gardening leave. Meanwhile I have no cover until another is appointed. I hope you manage to get sorted. Take care
Les
I too have recently had a GP experience that had me weeping into my soup when I got home. My GPs have mostly been good and supportive of me to date - but they seem to suddenly swing if they think they have made fools of themselves or if I'm pestering them unduly. I actually find the sudden reversals and impromptu outbursts harder to cope with than anything. Last time this happened to me a few weeks ago I had gone to see him feeling horribly unwell and his behaviour towards me felt like the last straw.
I mean I realise they are just human and have bad days. But it is inexcusable to raise voices or be unpleasant to any patient unprovoked - especially one who living with a chronic illness.
To say that sero negativity doesn't exist is just plain ignorant and her behaviour was completely unprofessional. I would be tempted to report her and the practice for this but I guess this might negatively impact on a fresh start with a new practice for you.
She was also undermining your consultants and shouldn't be allowed to be a doctor purporting these kind of views about seronegative Inflammatory diseases when this plainly contradicts medical research and established facts about autoimmunuty. It makes me wonder how many patients will never get to see a rheumatologist with GPs like her about? Hope you can find another practice that is much better for you.
I live on a Scottish island so have no choice about my medical team but luckily there is one very empathic and supportive part time woman GP who will usually refer if in any doubt rather than trying to play God with my health as the man often does. With our practice it is all about money - the man tries to save practice funds at all costs where the woman says she doesn't give a stuff as long as her patients feel better!
I can associate with what you say in your first paragraph.my gp was good up until three years ago when my symptoms suddenly got worse and referrals to two consultants who failed (1)to listen and accept what I was telling them (2) to give me a diagnosis.since when I have had no support from my gp and like you he has swung around because I kept going back with new symptoms being dismissed and not getting told anything.three years on might be getting somewhere but have received no apology and still have unexplained pelvic and abdominal pain etc.
It seems all so unfair for you when they seem to close ranks and stop actually listening. Thank goodness we have our support friends on here who will always listen. It is pretty awful for you to have to live with this undiagnosed pelvic pain for so long.
thank you C.i wanted to stay up and watch eastenders double bill last night but in so much pain and discomfort and feeling nauseous had to go to bed.woke at 5.30 and the pain is just as intolerable from the time i get up.really appreciate the support of the majority but no matter how much support everyone gives it doesnt make the pain any easier or go away or the doubts in my mind .the only way to get a gp appointment with my gp or the female one is to turn up at the surgery at 8am on monday morning.i dont want to have to go to A&E or maybe the dr will do a home visit?i wouldnt be so concerned if it wasnt for my dogs concern and knowing that no-one has given me a diagnosis
Every time I take my dog to the vet, I always think, this is more like it!!!!
A vet friend told me I had autoimmune disease over twenty years ago when my surgery were still treating me as a "mystery" patient. She said if I had gone to the Vet hospital I would have been treated by five consultants all getting their heads together and sorted out in no time! Time for the furry suit and a chimp mask!!
But we are all left without help. Thanks for sharing your experience and I hope you get someone you can really on very soon and all the help you need.
I so relate to what you are talking about with your recent experience with your own GPs. It is the almost Jekyll and Hyde character changes they seem to go through. From being smiling and benign, to sneering and abusive, they are the ones with issues, not us!!!
Our new head of practice has his hand in the money pot and has the control of the drugs and I think they are all being bullied by him, but I don't need to be part of it.
The old Gp was the best example of a compassionate, intelligent and very wise doctor. In fact he was a one off and so many people were panic stricken when he retired early as they knew what was coming!!! I think quite a few folk will be jumping ship soon.
You are in a difficult position where you are in a small community but your lady doctor sounds the best bet. The man treated you abominably with your lumber puncture results,
And you are right, they are terrified of losing face!
After reading your letter and all the other replies I can honestly say I feel Ashamed that there are so many so called Doctors who treat their patients like this. When I had one young doctor tell me the swelling in one of my legs and ankle was down to my age. I did point out that the other leg was the same age and that was fine. a) She did not see the joke and b) continued saying "at my age ..." I was Livid, I wrote a letter of complaint to the manager saying the doctor was being ageist - I was 65 then. I did get a letter of apology from the doctor and the practice. I have since had a run in with another doctor who after 10 months admitted I had been right about a problem with my ear/sinuses and did say she was sorry and should have listened.
YES Doctors are overworked - mainly with paperwork that no one reads - but they should Listen more. It is Your body and 90% of the time we are right, especially when it comes to Lupus and related problems as I have been 'dealing' with it for nearly 35 years now'. Join their PPG (Patient Participation Group) by 1st April every Doctors have to have one or loose money. I joined ours over 11 years ago and you see what is going on behind the scenes and you find out a) the best way to get good results and b) you can 'educate' the doctors about things they would never think of as an illness.
Sorry to hear about your awful treatment by your GP. I would complain first to the manager of the surgery (if they have one) explain that no GP should raise their voice as unprofessional. If no satisfaction google nhs choices making a complaint. They give you the ombudsmen address and what to write in your complaint. Hope you get it sorted as this GP I think needs people skills training.
Joining a patient participation group sounds a good idea, but I will wait till I have gone to the new practice . The Gp who treated me badly is in her early fifties with lots of experience, I think she might be cracking up actually and being "got at" by the new bully at the top. I am not going to rush to the other practice immediately but take my time to find the best for me and then just disappear and they will wonder why we have gone!!
I am in a very fragile state physically just now, and have the first of three weddings, April, May and June, three of my four sons, coming up in five weeks.I am so desperate to be able to cope with the events for the family and also have relatives from New Zealand coming to stay after the first wedding.All my strength must be kept for that and then I can and will deal with the rest.
The Depot Medrol injection from last week is beginning to help but I felt very shakey and weak this morning and know it is because of that idiot doctor upsetting me. It will pass and I will improve and the rheumatologist is giving me another booster one in May to help get through the last wedding!!!
Life is always complicated!
Appreciate your support!! C xx
I haven't joined our PPG but I am a volunteer representing the public interest for a large Scottish healthcare organisation. I feel that I put an awful lot into the NHS unpaid and therefore feel I can expect a lot of it in return - not just for me personally but for everyone who needs it.
I don't like feeling angry with my health professionals and would always prefer to have a good working relationship with them rather than being at logger heads. But it is so damned easy for them to make us feel like time wasters/ hypochondriacs and for me the test of a good doctor is that they listen, counsel if required, and reassure by doing thorough investigations or referring if in any doubt. If a patient is left feeling abandoned or criticised then they are only going to end up costing society and a practice more than a patient who is treated fairly and appropriately and accorded respect from the outset. It's a no brainer! X
I really admire all the voluntary work you do Twitchy, it is only when we,the patients, can be heard that there might be changes.
So many out there can't speak for themselves. I wonder if young doctors' training nowadays is any better at actual face to face consultation with patients?
Not a lot of evidence for that yet is there! And as you said the government doesn't help!
Thanks CuttyS - I do enjoy the work but find it rather frustrating too and don't want to feel the work I'm doing is just tokenistic/ box ticking ever but it could easily become this way.
I am genuinely impelled by wanting to improve things for everyone but it's a fine line and I'm not sure how long I'll be able to stick with it because it takes so much out of me. I end up resenting those who are very well paid and can't be respectful or kind with it. I know doctors are mostly overworked but so are many people who earn far less. Doctor gods are a real problem for the NHS I feel. My GP (the problem one) knows I do this work and tells me some of the problems as he perceives them. But this now annoys me too because I think he and my rheumy and neuro all assume I must be well if I can continue to do this work. They don't see how much it takes out of me or really understand my reasons for doing it. I think they imagine it's a status thing or something - I don't know. I'm starting to think it counts against me as a patient and that's not good!
I can so understand your frustrations and also how it could backfire against your own treatment, so they don't realise what a profound effort your are giving to do this work!
There are so many nameless people out there who can be helped by what you do , it is utterly commendable that you keep on trying despite the dreadful symptoms you are coping with just now.
Your woman Gp seems the only one relatively human and normal, so I would keep with her meantime.
Hope you are getting a rest after your journeys of last week and that your stomach is improving ,at least a little.
One thing I used when I had gastritis was a large spoonful of Manuka honey, the stronger stuff if possible( I know it is expensive though) I took this just before going to sleep and it did help a good bit. In fact a very pleasant gastroenterologist at the hospital said it is used in hospitals to help heal varicose ulcers which refuse to get better with medication.
It seems to have a strong antiinflammatory effect. I used to take it alone off a spoon or else with a couple of oatcakes.
HI recently had a face up with a young GP locum who according to staff in the office is sorting out the prescription hunters, but this one was annoyed
1. that I travel outwith my area for treatment
2. three missed appointments at a local hospital
I telephoned the hospital who had said i has missed the appoint and after getting dates was able to point out that on two of the occasions I had been in hospital having had a stroke and the second Id fallen and again was in hosptal after a fall wrongly diagnosed ,later admitted after much complaining, in writing .The third , the hosp changed my appointment following a call from myself.
I also called my daughter to say about how I had been treated.
Had the GP Locum checked my records he would have realised these points and not as the staff thinking he is weeding out the patients who dont conform, he is loosing them patients from the practise
This is a sign of the times I am afraid and with the pesent government not likely to change for the better.
PS I still travel hundreds of miles for my treatment where a major health problem was spotted and dealt with despite being reported to the locum a few times.
Unbelievable! When it was all their fault to begin with!!!And they will feel so smart and ticking all their boxes to have put this young locus in charge of chasing people up.
Just as well we can share, my husband this morning said I was much cheerier than yesterday due to all your support!
I am so sorry to read this. It sounds like the only Gp who had any insight in to what it's like to suffer diseases and had a bedside manner has retired. We all have bad days but to treat you this way is unforgivable. As a Gp they are the go between for us and refer us to the appropriate specialist who uses their specialist knowledge to guide our treatment. I know primary care is stressful these days and individuals are extremely overworked but really there was no need for your poor treatment.
Your consultant seems to be following a routine approach. Give steroids and if it works then replace by a immunosuppressant rather than continue steroids which can cause more problems in the long run. It makes you wonder how much she really knows about these diseases. I have learnt a lot since I have been suffering and I know I wonder how much the people I work with/ for understand (a Gp practice). But they all try.
Move practices because that is extremely poor practice and can only add to the stress you don't need.
Thanks so much for your kind comments. I would have sunk into a miserable depression had I not been able to vent my frustrations on here.
I was also cheered up by the fact that you mentioned the treatment of changing me to another immunosuppressant to reduce the steroids is in fact what they normally would do at this stage.
The amazing thing is that this GP is so ignorant she took it as a proof I should never have been on the steroids at all, totally missing the point that they had worked dramatically in helping therefore he was trying something else less harmful in the long term. Despite the negative bloods the Rheumatologist has in no way belittled any of my symptoms and says definitively I have an autoimmune disease.
She as you say ,has no clue about those diseases and I am horrified after all the years she has been practicing that she is so ignorant. She needs taken away and educated? When, she read the initial letter eighteen months ago from the rheumatologist, he said I have definitive Sjogrens with possible Biliary Cirrhosis and maybe also Lupus but not shown yet in the blood. He said thirty percent of Sjogrens patients were always seronegative.
She read this out to me with utter incredulity in her face and shaking her head, I remember thinking in horror, she doesn't even believe the consultants,what hope have I got!
In a way this has brought it all to a head and made me determined to change practice so will be the best thing for me. I had fifteen years of my old GP who sent me away every visit (and they were many!) with hope and peace that he was always fighting in my corner. In those pre diagnosis years when I had to give up a job I loved and cope with declining quality of life, he was always there to pick up the pieces.
I will remember his blessing that I would get there in the end, and I know he would be one hundred percent behind me now in leaving.
This is just dreadful. At the very least I'd be tempted to put in a complaint to the Surgery about that GP. It's not acceptable, you shouldn't come out of the GP surgery in tears. The other GP sounds plain dangerous to me. But I have a mistrust of doctors after the docs at my surgery completely missed my hubby's obvious symptoms of pancreatic cancer after well over a dozen appointments - worsening backache, losing weight etc etc... awful.
It was quite awful you had to go through all that suffering with your husband when the symptoms were so obvious.My Dad had pancreatic cancer and it is such a trial to go through without a delay in diagnosis as well!!
I am taking my time at the moment and asking around before I finally decide where I will go, but there is one that looks pretty good. I see my consultant up in Glasgow tomorrow and will ask his advice too.
You are right that I should make a complaint as this was not the first time she has treated me like that. I actually think she is not coping at all herself and won't be surprised if she disappears soon!!!
Many thanks for your support, it has made all the difference to me this week hearing from you all. I don't like confrontation anyway but as others have said too, it actually felt like an assault. I sat stunned and never raised my voice or indeed had a chance to speak.
She had no right to treat any patient that way and I what annoyed me even more was that the tirade was brought on by my latest blood results being normal.I was actually being blamed for being so ridiculous as to have normal blood results yet also having an autoimmune disease. This was all despite her receiving many letters from the consultants explaining it to her!
Anyway, has been the best way to force me away from a practice that is going seriously downhill.
Thanks again, C xx
C I know how you feel. There are too many doctors who are so so so well paid and they try to take away the treatment which you are improving on. How so unethical is that??? You need to be careful..not everyone at St Thomas's (now at Guys) or London Bridge hospital is Pro seronegative according to my own experience..there are always "bad apples" anywhere..even at hospitals known to be much better.
Interesting Ferntree that sadly you have discovered a bias against seronegative patients even in those hospitals which we thought were more enlightened.
It is all quite scarey, which way are we really to turn?
Trouble is even when I do get treated I an so drug sensitive that I can't tolerate so many of them.
Our Gp's at the moment are doing a clear out and trying to put everyone on the generic cheaper brands of drugs and I get in a mess when they try to change them. They get angry and tell me the ingredients are identical so they can't upset me.The problem they ignore is that the fillers in the tablets are usually vastly different and that is enough to upset many people.
Hope you are getting the drugs you need, it is all such a struggle living with this. C xx
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Stopped taking all meds
Immunosuppressants 
Suffering in silence due to GP saying it's all in your head!!
