Today I saw a rheumatologist. I was referred because I was diagnosed with connective tissue in my eyes in Mar 20. At the time I was referred back to the ‘Lupus’ specialist clinic (which turned out not to be anymore - living off past rep) The referral was ignored despite chasing it 6 months later. (the same Rheumy had dismissed me as having no connective tissue in Dec 19) Last Dec (21) the eye hospital referred me to another rheumy dept nearer to home. I went there because there is suppose to be a Sjogrens specialist -researcher there. Needless to say I didn’t see him.
Instead I saw a dr who clearly had no knowledge outside of the blood test diagnosis.
He asked me nothing initially other than checking my home and GP addresses. ‘A stickler for detail’. Right. He referred back to my appointment with a colleague of his 4 years ago. I had had to write back to this previous dr about 3 times for her to get her report right, as she had several comments that were just incorrect. (warning bells!) ‘Detail’. He wanted to know if I wanted to have bloods redone. I said it is not about that, I need to let you know where I am with it all. He spoke over me asking me for a simple yes or no. Which I refused and I needed him to know that I had a lip biopsy last week and that I had connective tissue in my eyes (that is why I was there!) He again spoke over me and made some comment about not getting a straight answer. When I did get to tell him I was awaiting a lip biopsy result his response was he didn’t know about them. End of. I mentioned being hypothyroid too, he happily told me about his wife also having HypoT. And how when she takes her meds she is fine, but when she doesn’t she isn’t! (insinuating non-compliance -warning bell!) He mentioned with glee the ‘free prescriptions’. He must have seen the reaction because he said, well you can pay for them if you like. I politely explained that free prescriptions or not it is about not wanting the condition....free prescriptions is little consolation. I hate that they make out this is a good thing, as if having a life long condition is a life choice! (warning bell!) He mentioned how hypoT very common. Doh!
He referred back again to the apt 4 years ago, and me having OA. And went into how he was a fellow sufferer, I tried to tell him the OA is not an issue for me...he talked over me again and offered his advice as a fellow sufferer, not as a Dr, of Volterox gel! When I did get a word in I told him I only had a problem with the latest finger to ‘blow’, which has not been like the others and is constantly in pain. I’d question if this is OA? That’s why we will do the bloods he said! (Him and his ‘bloods’!!)
He went on to say that having the dry eyes and mouth doesn’t always mean Sjogrens of Lupus. (As if I didn’t know that) And that is why they only treat if bloods confirm. (Covering arse more like) When I eventually managed to mention the connective tissue, he just bleated something about college in eyes and how it didn’t necessarily mean Lupus or Sjogrens again. So I asked what causes it then. It is sicca syndrome he said. No I said, Sicca is the name of the condition, it is not the cause. Well it is atrophy of the glands he replied. Ok, said I what causes the glands to atrophy and isn’t that all part of Sjogrens? He couldn’t give me an answer. You need to ask the Dental hospital he said.
When I had the biopsy last week, from the conversation between the Dr and her assistant, she struggled to harvest enough glands and commented on the small size. Had to extend the incision to get enough. I’m not expecting a positive result.
I wondered if I might have had antibodies, as have been struggling with dry eyes most of my life and dry mouth has increasingly worsened over the last 20 years. Might it be that the antibodies themselves have now died out, as they have destroyed the glands and have nothing left to destroy?
This twit of a Dr said how Sicca was much more prevalent than Sjogrens. I stopped myself in time, before I asked if that was because of the incompetence of Drs to test and diagnose, until like myself it is too late to get the antibody readings. Part of me wishes I hadn’t held back!
So if anyone knows of any rheumatologist that might have a clue, that might be worth seeing please let me know. I won’t be going back there again.
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UrsaP
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I live in the Midlands, I have travelled to Birmingham, Leicester and Milton Keynes for the different specialisms but so far the only ones worth their salt are in the eye hospital in Bham. Everyone else is just ignoring my symptoms - sicca acknowledged only. When the rheumy yesterday showed no interest in the connective tissue diagnosis I realised I was banging my head on his brick wall, and probably walking into a trap of getting a 2nd opinion from another poorly trained twit. I have looked up his profile and he claims to be into connective tissue disorders and states he gives 2nd opinions for difficult to diagnose cases.... he denied knowledge of lip biopsy and couldn’t tell me what causes gland atrophy, just a couple of the signs, other than him insisting on repeating bloods, and telling me about his own OA and his wife HypoT!! Is there someone out there please? Quite happy to travel if it is worth it.
Its over and hour and a half but many of us go to the Rheumatologist Dr. Elizabeth Price at Swindon DGH. Many of us start with a private appointment and she gives you between half hour and an hour for around £150.00. She takes referrals from all over the country as she is the top Sjogrens expert in the country as far as I know. I'm lucky I'm only half an hour from Swindon. I only go once a year at the moment so I stay private but she take NHS referrals but I'm not sure from how far afield. I had dry mouth, eyes, down below and extreme fatigue and joint pain but negative bloods for Sjogrens but positive Lupus. She diagnosed Sjogrens from just my symptoms and the Schirmer eye test, she didn't bother with lip biopsy as my symptoms were so pronounced. I then got the appropriate advice and medication. You can see her talks regarding Sjogrens from BSSA on You Tube or the Lupus site had a talk if you're a member. Hopefully you find someone. It may be someone comes up with a Rheumatologist nearer you but this is the lady who knows this subject inside and out.
Re: 'Family and Friends - Test' (i.e. Feedback on your last hospital visit)
..the more replies they get, the stronger the force for change...🙂
From my experience Eye Clinics are worth their weight in gold. I wondered what percentage of us have relied on them for getting to that fuller rheumatological diagnosis over the years.
They seem great at getting extra / repeat referrals to rheumatology and elsewhere Also getting scans.
My impression is they are a geeky lot, so focused on the patient and the tests they do.
Bless 🙏 - all eye hospital workers across this country 🙂 you set a brilliant example in how to be thorough
Thank you dg70 for that. I will certainly look into her. I went down to London to see Dr Peatfield some years ago. He was a life saver then. Happy to travel whilst I can to wherever I need to to find the right expertise. I suspect my file is coded - as was involved with a thyroid campaign, and because I have stood up to getting my son well, following a ‘glandular fever’ type virus... ‘type’ because 4 doctors over two surgeries couldn’t put 2 and 2 together to think to check him for that before giving him antibiotics for tonsilitis which he didn’t have! He was 17, just started a new school in 6th form, on a scholarship - perfect age and circumstance for GF! By the time they tested him, when I asked about GF, 3 months later, having ‘googled’ it, of course he was never going to get a pos diagnosis, I only realised this after. He struggled for 2/3 years after. Missed out on his scholarship, had to come home ill. Lost two years study. He lost out on numerous opportunities. And the Drs didn’t give a toss. I ended up going in with him to GP to get them to properly check him out, but they wouldn’t entertain adrenal issues. They just kept blaming the rashes, fatigue and sickness on Eczema. And there must be something on his. and my file, as Munchausen’s was intimated at one point, at the point his new surgery, where he was at Uni, would likely have received his file. The change in attitude was blatant. I suspect my dismissal at the various rheumy is based on whatever the code on my file is. The Bham eye hospital don’t as a rule get the files, they like to start with fresh eyes. And clearly an open mind too! Refreshing.
It was Dr P, again who recognised straight away that my son’s adrenals were struggling, his rashes, which then triggered his eczema, were a sign of adrenal struggle, that is why ‘cortisol’ based cream was all that cleared it, but was not addressing the underlying issue. Adrenal supplements have made all the difference. He has been so much better and has got on with his life, thanks to Dr P.
I am just fed up with Drs making assumptions, judging us without listening and treating us according to their own bias. We are being constantly fobbed off with ’specialists’ that are sub standard in their field.
Could what you have and he have be genetically linked? I guess they have done all the tests but bloods are not always conclusive. Lets hope genetic tests and markers come into their own post covid and they find a better way to diagnose us. Autoimmune still seems like its not even on the agenda for some doctors. I was written off as a psychological case a while ago but I kept fighting until I was properly diagnosed. I just kept thinking if I am this fatigued I must be fighting something I knew it just wasn't normal for someone in their forties to be this tired. I was more tired than my 70 year old mum. I live with fatigue because I know what I'm fighting now and the medication helps a little. Nothing is as scary as not knowing whats the matter. Medicine is still so much in the dark ages and it's pot luck who you see and what help you get. Hope your journey takes you somewhere soon but mine was over 10 years.
Yes, likely genetic links. And yes, I know what you mean. I have been fighting since my teens, and think I probably had something going on during childhood. I was always tired, cold, itchy (dad would give out, people would think I had fleas! lol) Pains in legs, having to sit in hot baths, in agony - put down to ‘growing pains’. From 11 intermittent fainting. All sorts of things. I started with conjunctivitis that turned into ulcer in my left eye when I was 18, have several reoccurring episodes, always in the left eye. A friend who has lupus and many other diagnosed AI conditions is convinced I have lupus, she has seen many of the signs. I saw an endo whenI was around 20. He couldn’t make his mind up and arrogantly dismissed me with a flick of his wrist....literally! He had already operated on at least one of my sisters for hypoT at the time. 10 years later I got a diagnosis. Spent another 20 years on T4 getting more and more ill. Usual stuff - weight fatigue, pains, etc etc.... I saw Dr P in 2010, I’d given up work at that point I was so ill. I didn’t know that hypoT could be considered a disability, had I known that maybe I would have stayed working at least part time. TG for Dr P, and the support of my then GP.
I turned 60 this year.
So yes I hope genetics do help, sadly I think that so little of the genome genotyped as yet that any genetic markers, especially for the likes of thyroid, or AI conditions, because they are so much more complex, are a long way off. The ones they have looked at are likely going to prove insignificant to others that may never be investigated. I also believe that too many of the BP were, or are now, invested into the genetic companies and will direct research into areas they can make most money. Female health will not be top of the pile.
I also believe that in cost cutting they are sidelining any condition that affects women over 40 - past useful childbearing age maybe? HypoT, Lupus/Sjogrens anything difficult to diagnosis that can ‘easily’ be dismissed, ignored if the proper investigations are not undertaken or interpretation is reliant on biochemistry and such only. Things that are considered so complex that unlikely to draw law suites for malpractice. The Dr ticked all the boxes, went by the guidance...etc. Such things as HypoT - TSH only - Sjogrens largely reliant on Anti lo/ra even though I saw 30-70% of false positives? 30 -70 totally unreliable then, yet weighted heavily against any symptoms?
I could go on but only going to wind myself up.
This Dr yesterday said that sicca was more common than Sjogrens. It will be if they won’t diagnose properly!! I wonder how long before diagnosed Sjogrens numbers fall....?
Funny you say about your eye. Its how i got to my rheumatologist. I had a cyst come up on my right eyeball. The ophthalmologist saw the dry eye and i said dry mouth and he said you need to see dr price as i think you have sjogrens syndrome so off i went and finally got answers. Only my dsdna blood test was positive though. Everything else negative buts its the dsdna which shows you have something autoimmune going on. Higher insurances, no more bupa was a small price to pay for a diagnosis! It's the holy grail we seek for years. 😆
My dndna was weak positive too, that seems to have been ignored too. Trouble is Private now watered down to what was NHS years ago. A friend always goes private, not through insurance or anything, nice position to be in, but she reckons that there is a 3 tier system, sent by NHS, paying by insurance and paying self. I suspect the only way now is private but will NHS now listen to private Dr even if they work in NHS too?
Yes I have been between private and nhs all my life. Sorry to say my experience is that you often only get treated like a human being and given time if you pay. I've been given the best treatment just about every time on Bupa and also no I privately fund myself. For ones in our condition who have been pushed from pillar to post every penny has been worth it. NHS has been a disaster every time for me. Others may have a different experience but I often go back to nhs to save money and then get treated hopelessly and wished I'd paid. You can see a consultant privately and then transfer to NHS after with the same consultant usually. I did but then decided to stay private with my consultant because I like the peaceful hospital atmosphere and the time she can spend with me. If you need bloodwork and are not on insurance then they will write to your GP and get them to do it to save the private rates for lab fees. They can also write to your GP for anything they prescribe and do it through them or give you a private prescription then and there and then you get more from your GP later. Most consultants work in both the private sector and NHS there is no difference except the time they can give you. I notice no difference between having Bupa and funding myself the private treatment I get has been exactly the same on both except maybe they go to town on the blood work and tests when an insurance is paying and are more mindful of tests if you are paying being that they cost a lot.
It has taken me 7 years to find a Rheumatologist who actually really knows about Sjogren’s- I have had to go privately but at last I am being cared for - I live in Surrey but if I were you I would stick with Birmingham or call Elizabeth Price. She treated a friend of mine - excellent. Birmingham has a good reputation I believe. Good luck.
Sadly the Bham clinic is, I believe, living on past reputation. Dr Gordon retired from there, before my time. I did see a good chap there initially but it is impossible to get to see anyone twice. And I didn’t get a chance to see anyone for a second time. The new h of D just dismissed me on a CRP if 2, and previous bloods. It was only because I pushed I got to the eye hospital and dental hospital. I was referred back to Bham, but they just ignored the referral.
I made the mistake of going to MK when Bham ‘lupus clinic’ ignored the referral. I didn’t find them that good. The dr I actually saw seemed very good, but the new head of dept seemed disinterested and they seem to have a policy that they never let you see the same dr twice, avoiding law suits?! I won’t be going back to MK. Not sure what my options are now beyond trying to see Elizabeth Price. But seeing GP in a week or so and will be telling her I’m not going back to MK.
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