I saw my new Rheumatologist yesterday and I am struggling to interpret what he said or how I feel about it. I guess the best description is ambivalent. I was very anxious given the last Rheumatologists attitude. The nurse who took my BP said that people were in and out so quickly that he was keeping her busy. He was very polite, shook my hand, wanted to know who my carer was. He started by saying he had read my notes and knew everything about me. He said you have Fibromyalgia and have exhausted every treatment? I resisted the urge to deny, rage and scream, instead I told him I had brought a bullet point history of diagnoses in case he did not have my notes. He gave them back to me and said you tell me what I do not know, read it to me. So I did, he listened and only interrupted to clarify that two Rheumatologists, a Haematologist and St Thomas’s had confirmed SLE. He said I have listened to you and kniw I need to examine you. I was shocked as it was the first time in six years that a Rheumatologist had done so. He was cracking jokes but so swift I struggled to keep up with his demands raise you leg, bend your knee, sit up,lie down etc. Afterwards he declared that fir someone so obese I was very swift?? Not a description that anyone who knows me would ever use. He told me there was no sign of Fibromyalgia. He said I did not have Lupus. He said it was great news as I have very mild UCTD. He said I should just concentrate on getting better and be positive. He prescribed colchicine again for the genital ulceration and will see me in four months. If I do nit have Lupus why have I been treated as if I have for ten years? Do I stay on this site? Am I an imposter? If it is mild UCTD why do I feel so awful. I have mouth, genital and anal ulceration, severe fatigue that is debilitating me, pain in most of my body, Raynauds, Underactive Thyroid, Pernicious Anaemia, I have unexplained bleeding sores in my oesophagus ( biopsy negative for thrush) . I am truly struggling to function. Any advice would be so gratefully received.
Imposter: I saw my new Rheumatologist yesterday and... - LUPUS UK
Imposter
CecilyParsley, I have uctd too, I guess that's great as hopefully, it means we won't go on to get serious organ involvement?
You're most definitely NOT an imposter!! I have spent years (& still do from time to time) feeling that it's 'all in my head.' It is a real diagnosis and my treatment is similar to that for rheumatoid arthritis and lupus.
Bit concerned that you were told 'just concentrate on getting better and be positive' - if only it were that simple...
Being positive sadly doesn't eradicate debilitating fatigue, pain, raynauds, sores,asthma, allergies etc. Rather patronising of him!!
Did I read a few days ago that you're seeing a rheumatologist in Wales? I live in mid Wales but luckily for the time being am sent 'over the border' to Hereford. My rheumatologist there has been a life-saver, literally the first person to really listen to me, examine me and offer some treatment.
Sorry haven't got any advice really to help you but I so understand how you feel.
Sending gentle hugs xx
Oh dear... some doctors are very prejudiced against people who they decide are obese, and the comment he made about moving swiftly for a very obese person is really a backhanded slap. Doctors with these prejudices just write off any real health concerns and symptoms and blame everything on being fat. They often give veiled euphemisms for them wanting to say 'go on a diet you lazy cow and that will fix everything' which they can't really get away with saying, so instead they say 'you're not really sick, just be positive.' So they refuse to take you or your illness seriously.
I would change doctors if you can. Get copies of all your bloodwork and have them evaluated by someone else. This man is not going to help you because he has stereotyped you as an obese person whose problem is not illness but that she's fat and causing her own pain. Autoimmune disorders are diagnosed and treated via bloodwork, not via rolling you around on an exam table and calling you obese.
I might even report this guy.
Hi thank you so much. It has made me question everything to be honest. Could all those other physicians have been so wrong? I agree if I could pull myself out of this debilitating fatigue , constant infections, pain, itching, rashes I would. I get so fed up. I put on ten stone since I was diagnosed with Lupus in 2009 and I wasn’t slim to start with. It took me two years of hard dieting and exercising, walking as best I could to drop seven stones and over the past year chest infection, pleurisy, cellulitis and repeated UTI’s, TMJD has made me exhausted and I have been Unable to exercise so piled on three stones. Yes I am in South Wales and once was seen by Dr R in Hereford. He was extremely thorough but felt I had Bechets not Lupus. I wanted a second opinion hence the referral to St Thomas’s and he really was unhappy that I felt the need to do that. Strangely enough I was looking through my notes and found a letter from him requesting that I be tested for Hyperparathyroidism given my severely low Vit D. It was never done and now my calcium levels are very high as is my B12 indicating that it may be a real issue.. It is awful that you start to question yourself when Doctors make such banal statements as be positive and get on with your life when you shake with fatigue after having a shower . I really appreciate your kind words xx
I see Dr P in Hereford.
Oh wow. Parathyroid problems can make you feel awful also and sometimes it’s hard to find a doctor who will listen. The surgery is simple but it’s such a specialty you need to find an endocrinologist that specializes in parathyroid. High calcium is an indicator. At least have them test your parathyroid to see if it’s high. I’ve had 3 parathyroids removed. I’ve been diagnosed with APS and possibly lupus. But parathyroid alone can cause severe fatigue
I had never heard of it prior to testing extremely low for Vitamin D. St Thomas’s said that I had barely a trace of it. The Rheumatologist then wrote to me saying I needed my calcium levels tested as with that level of Vitamin D I almost certainly had Hyperparathyroidism. It was just pooh poohed by my GP and subsequent Rheumatologists. One said you have enough wrong with you without looking for more. I have been feeling awful since the last Rheumatologist upped my Hydroxychloroquine to 600 mg then when I developed the macular cysts took me off it. I feel weak, clumsy, fatigued, agitated. I have had nine lots of antibiotics to fight various infections UTI, chest infection, cellulitis. I am at the point where I do not know what is causing the issues but at least my GP is repeating the bone profile. I will take a copy of the Rheumatologists letter from 2013 with me to show her and hope that if it is the parathyroid it can be dealt with quickly. Did you feel much better having had yours removed?
Probably not the answer to all your problems but fatigue, bone pain, etc is a big part of it. Oddly enough, my sister and I both have it along with the autoimmune stuff. You need to see an endocrinologist. It can ruin your kidney, cause osteoporosis, heart problems and a host of other things. It’s a simple blood test. If it’s elevated, along with your high calcium you most likely have it. Again, it’s a fight to get a doctor that understands it.
Thank you I will definitely pursue it and let you know how I get on. If just some of the fatigue and pain eases I will have a fighting chance to exercise a little to lose weight and get two new knees.
Hi CP. You are certainly not an imposter!!!
Moving on, I wish I knew of a helpful way forward for you but, other than pushing for a referral to the Hereford rheumy (see Happykins post), I'm at a loss.
I have a few comments about your current rheumy. Although he was polite, I also think he was being rather arrogant (many of them are, unfortunately) - how dare he call you an 'obese patient'! How dare he say he knows 'everything about you' at your first meeting, even my hubby of many years admits to not knowing everything about me! I don't understand how he can say you definitely don't have Lupus (please correct me here, but haven't you had positive blood tests in the past?).
My impression is that he rushed and bulldozed you through the consultation and then pushed you out of the door clutching a prescription for colchicine Maybe I'm wrong, but it seems that way to me. I wouldn't have been happy with this outcome.
Anyway, sending you lots of gentle hugs and please let us know how you get on. xxx
Hi Meg yes my bloods when diagnosed initially were all positive but my ds DNA is negative now and my C3 and C4 all within normal range. I am trying to access my bloods from when I was on holiday last September because the surgery there were very concerned about my results yet my CRP was only 8. They had not had my second round of tests back before we left but rang me to say I must contact my GP immediately. Unfortunately for me I saw a locum for admitted I know nothing about Lupus and did not understand the issue. She ordered more bloods but failed to order ANA, ds DNA and only went with the CRP which she put down to cellulitis. I don’t think the Rheumatologist rushed my appointment but you are right he made several comments about my size, My only alternative is the ass who said I had Fibro and hysteria so I hope this one will actually listen to me at our next visit again. I have resolved to make a formal complaint about the last one. He stated that he examined me thoroughly twice and honestly he never touched me. Xx
I’m not surprised that you have conflicting feelings. I agree that UCTD is a proper diagnosis and many here have it and carry on posting and supporting each other. So you are definitely not an imposter - unless I’m one too?!
But re the genital, anal and mouth ulcers - has no one you’ve seen mentioned Behcets? I think it would be hard to exclude by bloods alone and, as far as I know, it’s the AI/ Vasculitis that is most associated with this type of ulceration. The main treatment is Colchacine so I’m guessing this is why he prescribed it? Is he seeing you again now that he’s excluded Fibro (which is a good thing at least).Xx
Hi thank you so much. Yes the Rheumy in Hereford thought I had Bechets. St Thomas’s were maybe it is Bechets but you definitely have Lupus. The next Rheumy for five years said maybe Lupus, maybe Bechets, definitely Fibro and APS. The last one as you know said Fibro and hysteria gggrr. He will see me again in four months. It is sad that I was in tears because he acknowledged the cysts on my macular that the last Rheumy said was in my head, and he said it was not Fibro. I had been so stressed before the appointment because I expected to be discharged. I was incredibly grateful that at least he listened and at least he examined me. I need to have my bone profile bloods done again on 10 th February as my B12 is 2000, my calcium 12 and my haemaglobin is low despite taking ferrous sulphate. My leukopenia is ongoing. Strangely he told me that my CRP at 8 is extremely low. He said for someone your size it is normal for your CRP to be 35 because fat acts as inflammation? I have never heard that before xx
I’d say you need to find a Vasculitis expert. As Melba says, many of these rheumatologists only know about common types of arthritis rather than rare diseases such as Behcets.
I was told by vascular twit dr last year that my CRP of 26 was my new normal due to fatty liver. But my LFTs are always normal now and when I’m on steroids or dmards it gets down to under 10 so this is errant nonsense.
Honestly I have only met 3 rheumatologists out of 9 and one professor of vascular medicine, whose opinions I trust! X
It is shocking to read and experience the diverse opinions and errant nonsense we get thrown at us. I am still smarting, crying and raging at the last one saying my macular ulcers were hysteria. I need to make a complaint to benefit those coming after me. He must be held accountable for his lack of professionalism. Xx
Oh absolutely. I have moments when I shake with indignation that I was to be discharged by vascular twit only last April with “just Sjögren’s and chronic illness” - CBT as the only ‘evidenced based therapy’ he could recommend. Grrrrr! Xx
It is just not good enough is it? I know that we are so fortunate with our NHS but we deserve better than to be given platitudes, be met with indifference or distain. I have met some wonderful dedicated health professionals who go out of their way to help , comfort and improve my quality of life but not a Rheumatologist sadly. I am so not looking forward to more tests with Urology or the referral to the dental hospital but at least they have seen me previously and tried their best to help. I hope that you now have a Consultant who listens to you? Xx
CecilyParsley I’ve been very fortunate to at last be newly under the care of a very nice young rheumatologist.
She is the same one who also sees Gloomy Eeyore from here and confirmed her Behcets. This is how I know a bit about it. I’m no expert but your symptoms seem pretty classic so I think you need to find a rheumy who can recognise this condition too. From what someone told GE here there really aren’t many other conditions that cause ulcers in those locations.
They may be able to send you to gynae to biopsy the vaginal ulcers to confirm, although a good rheumy like mine would probably take your word for it if the Colchicine helps. X
Thank you so much. GP ‘s have seen the ulcers in 1992!! He told me I had genital herpes. I was horrified. A biopsy came back negative , no treatment that was that. Another GP said it was infected thrush. I was dosed and reposed with canestan and anti fungals which had no affect other than to make me nauseous and sore . I took photos of them 😳. Two Rheumatologists have seen them and said probably Bechets but I do not have other issues such as the bubble when they take my blood which is why the diagnosis is tentative. When I get the ulcers I have tried to get to see a GP but there is a three week wait so they would be gone and they do not accept that it is an emergency. I cannot face a referral to gynaecology again. I was under then from 11 to 40 when I had a total hysterectomy. Xx
I think ulcers warrant an urgent GP appointment in your case so just white lie and say you have sinusitis or tonsillitis or something” mundane that warrants “urgent”! Xx
I had not thought of that lol. Mind you the routine now at my surgery is if you request an urgent appointment you tell the receptionist before 9 am why you want it and then have to wait for a GP to call you back. The GP then rings midday and has a conversation to ascertain if you need the appointment that day or can wait xxx
I wonder how he could make that decision to change it from SLE to UCTD on the basis of joint exams/ sitting/ moving etc?? I think some of the less experienced ones (or those who know more about rheumatoid arthritis than lupus) think it’s mainly about the joints when some people with lupus (most) have little visible in the way of joint involvement, bad pain but often no swelling or movement difficulties. And all your other problems etc felt dismissed?
So many people seem to get their diagnoses changed from/ to lupus, UCTD and fibromyalgia with little obvious reasoning given. Unless he can give you good reason and you feel the new ‘diagnosis’ accurately represents all your symptoms then you don’t have to accept it. It’s just his opinion and with lupus and all the related diseases, opinions vary so much. Can you go back to st Thomas’ ? Can you get your GPs to refer you to a Behçets expert? The ulcers sound awful (hope you gave him a shock by giving him a good look?!)
As to the obese comment?! 😱 If it cheers you up I asked my gastroenterologist if the stomach damage would make me fat and he said ‘no you’re fat because of the steroids’ I laughingly said how rude! And he said ‘no seriously, it’s the shape of your face and the chins’... chinS in flipping plural??!
(I’m actually a size 12 and quite a normal weight but do have an enormous steroid face! 🙄🤣 but really to say chinS was a bit unnecessary! I did laugh and tell him that but he seemed to think he was just being factual 🙄)
And your rheumy saying concentrate on getting better and being positive. Oh how much money we’d save the NHS and how much pain and suffering could be avoided for us if we could concentrate our dysfunctional immune systems into being normal 🙄 I think my response (although I’d have thought of it AFTER the appointment and just sat there in shock during the appointment 😬) would have been to say yes that’s great advice but could he please concentrate on getting a diagnosis that fits your symptoms and treatment that helps them - then it’s much easier to be positive when you feel medically supported and less unwell.
Was really hoping it would be a positive appointment. Don’t give up. The right rheumy and treatment to help is out there.
Sorry I can’t remember from previous posts but has anyone tried steroids to see if helps the ulcers etc? Xx
Omg I haven’t been a size 12 for thirty years but what a cheek for your consultant to say chins!!! Seriously this Rheumatologist was very touchy feels he slapped my hip fat, squidged my waist fat. I found it hilarious as he prodded his way around my bulk like a heat seeking missile. Had I not had a nurse present I would have found it bizarre. He told me that my CRP of 8 was nothing because with my size fat worked as an inflammatory and I could expect findings of 35 quite normal? You are of course spot on. If only I could just move on and be positive wouldn't that be great? He seemed to ignore the fact that I told him I was so exhausted I am shallow breathing and sat or lying down all the time. I want to get better I told him. He held my hand and patted it saying you are a positive person go and live your life. Happy New Year?? Bizarre now when I think of it to be honest. Yes I was on steroids for a year in 2009 when I first had the Lupus diagnosis. Thank you for your kindness, it means a lot xx
Has anyone mentioned Behcets to you?
Hi, yes I had a diagnosis in 2013 although I am not typical, I do not have the bubble when giving bloods. Since that time it has been a question except for the last Rheumy who put it all down to Fibro.
Very few people have the “ bubble “ when giving blood, especially in this country. Behcets symptoms vary with ethnicity as does the incidence.
The Behcets Centres of Excellence are centrally funded, that means it doesn’t cost GP’s etc anything to refer patients. I would ask for a referral, there are Centres in London, Birmingham and Liverpool.
Very low Vit D is a common finding in people with Behcets and other auto antibodies can cross react ( my complements were low and my ANA slightly high. ). It is true that people who are overweight can have raised CRP’s.
Thank you so much. Once I have completed my next lot of investigations re bone profile, anaemia bladder issues I will definitely consider asking my GP to refer me. I fully admit to knowing very little about Bechets Centres so that is really good to know.
The link to the C of E’s.
Behcets is challenging to diagnose, you really need to see an expert. The Vasculitis Clinic at Addenbrookes Hospital headed by Prof David Jayne is excellent as well. Don’t waste time seeing people who’s knowledge is lacking.
Thank you ❤️
UCTD is still an autoimmune disease, so the rheumatologist does not think you are an imposter. Treatment is similar to lupus. Hope your rheumatologist is giving you proper meds for your symptoms not his subjective feeling of "mild". As long as you are getting all the meds you need, it doesn't matter if he calls it mild or severe. For example my previous rheumatologist called my case mild although i felt i could hardly function due to the fatigue, but je compared me to people that lost their digits due to Reynaulds, and i only had discoloration in fingers... Again as long as he doesn't prevent you from getting the therapy, it's fine he thinks you are mild case
Thank you. It is so hard to be objective when you are emotionally invested isn’t it? I am nit on any treatment. The Hydroxychloroquine really helped my fatigue for ten years but since the last Rheumy upped my dose to 600 mg and I developed macular cysts I cannot restart it.
Sorry to hear about hydro. 600mg was probably a mistake :(. A good rheumatologist would probably have yu try other meds to control your symptoms, for example some immunosuppressant, prednisone if you have a flare, etc. In my opinion fatigue is the hardest to overcome and you have to be really strong willed to excercise despite fatigue so you do t lose your muscle mass. It happens to so many of us... Challenge your rheumatologist to give you more meds, not being on anything sounds scary considering your symptoms. I have MCTD and Im a mild case but take prednisone, mycophenolate, hydroxycloroqinine, and Benlysta....for Raynaud's I take topical nitroglycerin, very small dose and only in winter.
I do take mst, Garbapentin at night for my restless legs, aspirin for the APS, Fultium D twice a day for the low Vitamin D, iron sulphate three time’s a day for Anaemia, folic acid, Amlodopine for hypertension, Promethazine for itching, Omeprazole for acid reflux, B12 injections for Pernicious Anaemia,Levothyroxine 120 mg for hyperthyroidism.I use Hyloforte for dry eyes and saliva tablets for dry mouth, I use Instillagel on my genital sores and use Diprobase on my rashes. A bloody shopping list none of which helps the fatigue. I am falling quite a lot which gets worse with the fatigue as I am more clumsy. I have broken my nose twice, smashed my teeth out, cracked my knee cap and had numerous concussions. My hubby says he is buying a few Hunan size packs of bubble wrap lol Thank you for responding, it is much appreciated xx
But none of those are immunosuppressants. Also did you notice if iron makes you feel worse? My doctor kept prescribing higher and higher doses of iron and i felt worse and worse, until i figured our a connection. For some of autoimmune diseases iron can cause huge flare ups. Once I stopped iron I stabilized to my previous benchmark. Iron in blood never went up or down no matter me taking it or not. The body tries to get rid of iron in chronic diseases as it usually flares up the condition. Just something to be very careful with. We have similar symptoms. Im also hipothyroid
I was unaware of that with the iron. I struggle with it only in as much as together with the mST it causes terrible constipation. It never raises my haemoglobin significantly either. I have had iron infusions and the worst iron medicine 🤢. It is so confusing. I note from my medical records I have Gilbert’s Syndrome so should not take aspirin . So many drugs are contraindicated. I felt so much more awake and alive with the Hydroxychloroquine and I truly hope that my maculars heal fully so that I can re start it. Thanks for the information xx
I hope so too. Hydroxycloroqinine solved my pain all over, but not fatigue. I had to take bunch of other meds to help with that... I really hope you vould reatart hydroxycloroqinine, it's the safest (apart from eyes checks) drug of all.
Here is a link explaining iron in autoimmune diseases. academic.oup.com/rheumatolo...
Thank you so much xx
Hi CecilyParsley, I am very sorry indeed to read your post. This rheumatologist has just unilaterally overturned the diagnosis of two other rheumatologists, a haematologist and St Thomas's.....whilst cracking jokes. His nurse gave you the heads up about the speed with which he was working, clearly unusually quickly in her opinion. So he has also done this incredibly rapidly. St Thomas's has a national reputation on lupus, some would say an international one. I know which one I would go with if it were me according to my knowledge of lupus - both personal and as an international author on the subject. I would also question why someone who really understood lupus would put you through a series of rapid physical movements as these could have triggered payback pain and certainly extra fatigue. In summary, my opinion is that you have been treated OUTRAGEOUSLY here, and if you wish to be treated for your lupus then you cannot be treated again by this rheumatologist as he will only treat you for "very mild" UCTD. I hope the colchicine helps with the ulceration. With my very best wishes, Lily
Hi Lily, thank you so much. I think it was relative to my last experience that made this man credible if you know what I mean? I was totally devastated by the latest Rheumatologists assessment of me. I was so utterly shocked that I could not respond appropriately. He said and I quote ...I have met People like you before, always ill, referred to everywhere and nothing ever found. If you do nit have restful sleep you have Fibromyalgia whether you like it or not. I would change your optician as there is nothing wrong with your eyes and you have been given crap advice in the past including from London who think they know it all. When both myself and my carer argued that we had seen the scans of the fluid on the macular he laughed and said I think I would take the advice of an Opthamologist rather than an Optician. Clearly you read about the possible side effects of Hydroxychloroquine and your brain sent messages to your eye . His parting shot was if you get very ill you will prove me wrong. It devastated me. Therefore this recent one seemed far more willing to listen. I cannot dispute that my test results do not indicate active Lupus. I have a positive ANA, leukopenia, and that is it. In Wales we are not entitled to a second opinion so I am pathetically grateful that he did not just discharge me. I did go to St Thomas’s in 2013 and the Consultant I saw stated that unless someone else had taken my bloods for me then I had SLE. Six months later the very same Rheumatologist said that I had UCTD and discharged me based on my blood results. It is such a daunting process. No wonder I am despairing. I refused to see anyone for nearly two years until I got really sick again. I then had to wait eight months to see a Rheumatologist who was very ambiguous . He said Query SLE, Query APS, Query Bechets, Raynauds, Fibromyalgia, CFS, CPS, Hypothyroidism, Pernicious Anaemia. He never examined me in five years but at least he referred me to other specialists and monitored me every six months. Sorry it is a long response.I really do appreciate your advice and acknowledge your experience. I feel very lost Lily 😞
Hi CecilyParsley, please don't apologise for the length of your post. It clarifies just what you have been through and I can see even more why you feel so lost. Let me see if I can add anything which might help. You say you have positive ANA and leukopenia, and that's it. Although, I appreciate that one can have positive ANA and not have lupus, it also follows that it is also almost essential to a lupus diagnosis with some 98% of people with lupus having these antibodies. In addition, leukopenia is a symptom either of cancer treatment or of an autoimmune reaction, as I understand it. In the US there is a specialist centre for the exploration and treatment of leukopenia...it is in Seattle. So neither of these markers can be dismissed. Furthermore, rampant oral lesions or ulcers are a hallmark of lupus (one of the eleven diagnostic requisites, although others who have reponded to you think their position for you may indicate Behcets). Immunologic disorders in the eleven also includes vision problems. A lull in lupus activity often explains discrepancies in blood tests and this is the first time that I have heard a positive blood test for lupus being subsequently overturned. I have also come across a patient who having finally reached a true lupus specialist via an erratic journey via fibromyalgia and Raynaud's similar to you own was told "you have lupus and you have always had lupus". Wendy39 is the authority on the situation with lupus in Wales, but there are many in England and Scotland and indeed further afield in Europe who have been ultimately forced by crazy journeys such as yours to pay for a private consultation, hopefully with ongoing care once the diagnosis has been confirmed by the NHS. This site has said very good things about Professor D'Cruz and I can personally recommend Dr Wendy Holden who works privately out of the Candover Clinic in Basingstoke, Junction 6 off M3. I can guarantee that Dr Holden will listen to you and treat you with the respect that you deserve. With my very best wishes, Lily
Thank you so much Lily. I think it is so difficult to keep up with the diverse opinions of the Rheumatologists I have seen. When I was first very very unwell it was thought I had leukaemia, then a virus. I paid privately once my GP tested me for Lupus antibodies and it came back strongly positive. He told me take your mind off it by going back to work? I could not weight bare and was in such dreadful pain. I was then seen at an NHS clinic where I took photographs of rashes, genital ulceration, mouth and tongue ulcers and was diagnosed with Lupus. A Haematologist confirmed the diagnosis. The next Rheumatologist said Bechets and Fibro. Then a potential diagnosis of Low Grade Lymphoma by a Haematologist, Oncologist which was when I asked for a referral to St Thomas’s. I saw Dr S not Professor D’Cruz. He said unless someone else has taken your blood tests for you, you have SLE. Six months later the same Dr S said you have UCTD. I refused to see any doctor for two years I was so fed up but then got sick again. That Rheumatologist diagnosed query SLE, query Bechets, APS, Raynauds, Pernicious Anaemia, Hypertension, Hyperthyroid, Dry eye, Fibro, He left then I had the Rheumatologist who put my Hydroxy up to 600 mg to control my flares then three months later stated that I had Fibro whether I liked it or not and my eye problems were hysteria because I had spoken to People on this site who advised use of the Amsler grid. A Rheumatologist on the helpline told my GP to restart the Hydroxychloroquine for my MCTD. That Rheumatologist said keep her off it she doesn’t need it. Now this new one is saying I cannot take it because he accepts I now have cysts on my maculars. When I list this it seems exaggerated and farcical even to me yet this is my life. Thank you for listening to my rantings. I sincerely appreciate it xx
Is this new doctor order a blood work?
No but I had bloods taken two weeks ago by the GP
I use to ask my doctor a blood test 2 weeks prior visiting the doctor. I am in US and we have an blood test application, I look at it results and have questions when I see my doctor.
I had a blood test two weeks ago and I took that with me too thank you xx
You’re no more an imposter here than I am, and I’m going nowhere! My diagnosis is sometimes MCTD, sometimes UCTD, but as long as I’m treated ( and fortunately I am) the names don’t bother me.
Thinking positively and concentrating on getting healthy seems to be the new sit down with a cup of tea.
Much love to you xx
Thank you so much. I admit I am edging on despair currently. Like you I don’t give a damn what it is called as long as they at least try to help me. I get more fearful the longer I live with this and I definitely feel dreadful off the Hydroxychloroquine. When I saw the letter from the last Rheumatologist which stated that .....she has a very poor opinion of the medical profession, especially those who disagree with her self diagnosis...I cried and thought now everyone who ever treats me will believe that. At least it has prompted me to make a formal complaint now. I really appreciate your kindness xx
You have a good attitude! We are a rare group of patients who go by different names depending on doctor, symptoms on appointment day and the weather. I have been called undifferentiated, lupus, and smoldering lupus-like. Now who wants to be like ashes?!! But always « living and breathing. » Like you, I get treatment.
Keep 🧶
😀k
Smouldering Lupus? Omg that is a new one. I will start to fight back soon. I have to. I suspect I am depressed. I think my plan of a multi pronged approach is the only way forward for now. If any part of me is improving then it will give me a boost. Thank you again for the advice xx
I don’t hear that you have anything to fight against. Really. The rheumatologists who diagnosed you with MCTD and UCTD will continue to help you. They can make referrals - maybe to a gynecologist, a dermatologist - and they can develop a treatment plan for your joint pain and other symptoms.
Hope the first medication helps. It will boost your spirits and give you hope.
K
It is really difficult to sit in the room and try to say "I don't think that's right" We know how our conditions affect us, some of us have suffered for decades. We don't need to be told we are fat, don't they know we see that every morning in the mirror!
I have yoyo dieted for forty years and gained more weight every time I do so. I am dieting again now as I have to lose weight to qualify for a hip replacement. My orthopaedic surgeon is sympathetic and says to try my best but also he understands the effects of steroids and immobility due to widespread arthritis.
I saw another surgeon a few months ago about surgery for a torn rotator cuff, who was not kind, and said he could do it, but did I want to become a professional patient! All he saw was the number of different consultations with other departments that I have had over the previous twelve months.
Reluctantly I have declined the operation on my shoulder as he made me think I was a burden on the NHS.
The trouble is our conditions tend to overlap and we see so many consultants we start to get a feeling of being brushed aside and the diagnosis of "it's all mind over matter", even when they can see evidence though xrays and blood tests. They see us a drain on resources as we are too confusing to treat our many ailments and there are no quick fixes.
Even my lovely GP calls me a "complex case"
CecilyParsley if you have lost confidence in this rheumy then maybe it is time for a change. Having UCTD is a proper diagnosis in itself and the treatment is largely the same as lupus, so don't think it is "less" worthy. I would press to see a gynae who may give you different treatments for your ulcers, and also ask for a referral to a Behcets specialist.
Xx
Hi Bluebell, I am so very sorry to read your story. It made me cry. I seem to be either in tears or fighting them back regularly which is unusual for me. I totally identify with your feelings re being a burden, nit just on the NHS but on my husband and my friend, even the carer I get 9 hours a day. I apologise about twenty times every day. I do not know where the other me went. The me who ran a busy social services team, the me who cleaned my home from top to bottom weekly, the me who had a social life, who laughed and danced and smiled. I also identify with the term complex case. It is on every letter I have ever seen. We are not cases we are living, feeling people, sentient beings who need hope and kindness. I am huge. I lost seven stones for my total knee replacements but five pre op assessments later I despaired and gave up. I was refused surgery because of infections, pleurisy, my thyroid levels not conducive to surgery, angina. The last occasion the anaesthetist told me I was disappointing because I had not lost enough weight and that my new knees would buckle. I took myself off the list there and then. Since that time I have had infection after infection, chest infection, cellulitis and repeated UTI, the macular problem so I have gained three of the stones I fought to lose. All I want is to feel less exhausted to start to exercise again so that I can lose the weight again and hopefully get my knees done.I am so sorry to hear about the way you have been treated. I wonder if sone of these Consultants realise how very hurtful they are? I really appreciate your kindness and hope that you receive better treatment in future xx
Hi
Surely you’ve had blood tests to say you have Lupus, if not you need to get some done very soon andI would seriously question that doctor’s decision!
Please don’t leave us, I’m sure we all interested to find out what happens and we are a friendly bunch of people xx
Thanks Jacqui, yes some of the most informative and supportive people ever. I just did nit know if it was ok to stay xx
Cecily -
For a good description of UCTD go to: undifferentiated connective tissue tissue, hospital for special surgery
I think this description for patients will help you to understand why the doctor thinks you fit best in this category. It is possible that when you were diagnosed with lupus, the concept of UCTD was not fully understood or accepted. The bar seems to be set pretty high for lupus now. Certainly, that is how my rheumatologist sees it.
Hope this help.
K
Thank you. I think St Thomas’s bar would have been high when I saw them in 2013 though wouldn't it?
Not necessarily. Those doctors would have had their reasoning at that time. Doctors often disagree about whether a patient has UCTD or lupus. It depends what they emphasize in unclear cases. My doctor wants to see a high ANA, low complement and anti DNA antibodies. The classification had changed three times and is about to change again.
Maybe go back to the doctors who made the original lupus diagnosis. They will be happy to give you an explanation. For rheumatologists these distinctions don’t seem to be as important as getting the treatment right. If you were clearly in the lupus category, they would have you on Plaquenil because of organ damage risk. That is less clear in UCTD. Overall, the treatments are the same. Some people here are on steroids with UCTD because of lung involvement, and some lupus patients are doing fine on aspirin for joint pain. They have to look at the whole picture.
The big lupus issues are kidney and brain disease, which studies show are almost unheard of with UCTD. So doctors do want to be as accurate as they can be.
Do you have your letters from prior consultations? Sometimes doctors use terms such as lupus-like or latent lupus.
The key now is to get you feeling better. They never really treat the diagnose, but symptoms.
Thank you. My bloods initially were extremely high ANA, over a year with high CRP and CSR. My C3 and C4 were high, my Vit D was 0.6. I was told that unless someone else had taken my blood tests for me I had SLE. I was put on 400 mg Hydroxychloroquine and 35 mg prednisalone. My urine analysis was fine, lumbar puncture showed only one white cell. Bloods also highlighted leukopenia, large cell haemaglobin, low foliate levels. My MRI showed no brain lesions. My CT showed adynomegaly, heptomegaly and spenomegaly. I saw a Heamatologist who confirmed the Lupus diagnosis. I guess my confusion is that I was told there is no cure and yet now it has gone and if I never had it why were my blood tests confirming I did . I know that it is extremely complex and in fairness to the new Rheumatologist he can only go on what my bloods show now and that is a positive ANA, CRPof 8, dsDNA , C3, C4 and CSR all within normal range
If you look at lupus classification and also UCTD, you may get a sense of how all of these doctors are correct. One group may argue that the high ANA and low complement is likely lupus. The others may say you don’t have either anti DNA or Anti Sm and other more specific signs. If you had lupus nephritis, CNS disease, or inflammation in lungs or heart it would be clearer to all.
These illnesses come and go. UCTD is more likely to go into remission. That could support the last rheumatologist’s argument.
I am not a doctor. But nothing in what you have been told surprises me at all. The best thing to do is bring your original labs to your new rheumatologist. He will be able to explain it all to you. He may say you are more lupus-like in presentation but that he does not feel you meet classification for lupus.
It is confusing. You must have met criteria for lupus at one point. Just let the doctor explain it to you. Even if a different doctor diagnoses you with lupus, the treatment would likely be the same. Maybe ask to re-start Hydroxychloroquine.
The goal is to get effective treatment. Sounds like this new rheumatologist wants to help but needs time to get to know you.
XK
I did meet the definition for Lupus three time in 2009 from a Rheumatologist, Haematologist and Neurologist. In 2013 at St Thomas’s and in 2015 a Rheumatologist. I cannot re start the Hydroxychloroquine because perversely the Rheumatologist who stated that I was and I quote... one of those people who was always ill and referred everywhere and there was never anything wrong with them. He said I had Fibromyalgia whether I liked it or not because I had disturbed sleep increased my Hydroxychloroquine to 600 mg and I developed cysts on my macular. I really do not think it is too much to ask for Consultants to at least recognise that other professionals have diagnosed Lupus and that it was based on corroboration and blood tests and history, photographs of molar rash, terangeal rash and other symptoms. Yet they seem to prefer to insinuate that I want Lupus, am making things up etc. I gave this new Rheumatologist a précis if my diagnoses including dates, Consultants and hospitals so that he could look it up if he choose. He said he did not need it and twice gave it me back stating that he knew all about me. I am less concerned by the diagnosis of UDCTD because it appears to fit my symptoms very well than the Fibro and hysteria label the previous Rheumy gave me despite having put me on an overdose of Hydroxychloroquine but it is both confusing and frustrating that within four months three Rheumatologists have looked at the same set of bloods and come up with three different diagnoses ie Fibro, MCTD and now UCTD and the only medication I have been prescribed is for Bechets?? Thank you so much for taking the time to respond. I appreciate it very much xx
It really is confusing. I can’t explain the fibromyalgia/ hysteria diagnosis. But, as others have mentioned here, it is not unusual for rheumatologists to diagnose differently. It would be good if there was one blood test to diagnose lupus. But there isn’t one now. And the ANA tests most rheumatologists see as a bad test. It only confirms lupus when they already highly suspect it. As you said, you have had symptoms and labs in the past that point to an autoimmune disease. Three rheumatologists agree you have a systemic autoimmune disease. They just don’t agree with your original lupus diagnosis. I feel confident they can defend their positions. A lot is dependent on the style of the doctor.
I think you are looking for facts. This is not a factual area. It is more an opinion on a syndrome. It is the totally of your history, your symptoms, and labs. It sounds like this rheumatologist already looked over your labs and history before he saw you. He believed you had been given a diagnosis of lupus.
Maybe it is best to choose the doctor you feel you can work with best. It takes a while to develop a relationship.
It sounds like you are so upset by the one rheumatologist who negated you’re diagnosis that it is hard to accept that you have now had confirmation.
In my opinion that rheumatologist was rubbish. For a start having Fibromyalgia (if you have it) does not mean that you haven’t got lupus as well. St Thomas are the best in the country, though of course they can sometimes get it wrong, so he is being very arrogant to dismiss their diagnosis on meeting you for the first time. Blood tests are not always accurate I think. Fibro is normally diagnosed partly by looking for very very tender spots on your body. Do you have any?
I know more about APS than lupus so I’m also surprised by the Query APS comment. Have you been diagnosed with this before? Have you had the blood tests done, have you had any clotting or miscarriages?
Sorry if I’m being too inquisitive!
Judi
Not too inquisitive at all. Yes I was diagnosed with APS in 2009 and just take aspirin. I was first diagnosed with Fibro in 2011. The Rheumatologist pressed so hard around my neck and shoulders he left fingertip bruises. Since then all of them have jumped on the bandwagon. The last Rheumy stated that I was tender in eleven spots and that that together with my insomnia was a definitive diagnosis..except he never examined me on the two occasions I saw him. Am I stiff yes, do I have widespread pain in my legs yes but I have osteoarthritis. Xx
Gosh you sound like me! Ok so diagnosing you with APS should not be a problem if your bloods are positive, assuming he did them.
Ouch, that rheumy left bruises?? That is beyond appalling. Do they not know that sleep problems are common in both lupus and APS? It amazes me the lack of knowledge there is sometimes. They were long time back doing a study of sleep and APS at St Thomas’ sleep clinic, never heard if they found anything as I moved and stopped going to St Ts
They did at one time diagnose me with fibro to go with my APS, osteoarthritis and lupus-like illness. But I had no hot spots at all. They all started blaming that despite all symptoms being part of the other illnesses. I fought back by going to see a local rheumatologist privately, I knew of him by reputation and because he is Graham Hughes son in law so at least he knew about APS. He agreed with me and transferred me to his NHS clinic so I had no more nonsense about fibro.
So, what can you do?
Fight back with this new consultant and take downloaded info to prove that sleep problems can be attributable to lupus and APS and tell him that you have no hot spots. Or write a letter to him, copied to your GP, explaining and giving him the info.
Find a new consultant who knows more about lupus etc and ask to be referred directly to him. I found my latest one after moving, from the patient-recommended list on APS Support UK website under ‘self help’.
I don’t know where you live but could you get referred back to St Ts again and at least get things clarified and diagnosed properly?
I live in Wales where we can no longer be entitled to a second opinion or be referred to England as we used to. I am very much afraid that I am stuck with this consultant. Right now I think all I can do is get my bone profile done as planned next week to ascertain whether I have Anaemia on top of leukopenia and Pernicious Anaemia and whether my parathyroid gland is raising my calcium level. If they are faulty it might be contributing to the overwhelming fatigue. I hope in the four months prior to my next appointment with this Rheumatologist...if he stays, I hope my bladder is assessed and my jaw assessed that way I will know what I need to address with him. I will also know whether the colchicine is deterring the genital ulcers. You are so fortunate to get Prof Hughes son in law too.. I always say if I won the Lotto I would book a whole bus load of Lupies into the London Bridge Unit lol. Xx
I used to be even luckier, Dr Khamashta and Dr Hughes were my consultants!
I have problems with my parathyroid too and I’m beginning to see more people with APS say the same. One lady had the operation even though her PTH was only a little bit high, they found a problem on her scan. They keep blaming my low vitamin D but my calcium is on the high side of normal so it’s unlikely. But I’m too unwell to cope with the nuclear medicine tests that I need to have done at the moment 😟
I do hope you can get things sorted out and get the help you quite clearly need.
But you are quite definitely not an imposter, far from it.
I was reading an American article on Hyperparathyroidism and their advice is that you can have an issue even if your PTH is only slightly raised. I really hope that you feel better and are then able to get it sorted and thank you so much for helping me to feel better about being here too xx
Hi cecilyparsley
I want you to know you are definitely not an imposter on here and you must stay. I too have mild UCTD but oh boy have I been affected over the years with a lot of symptoms that make day to day life really hard so that diagnoses doesn't mean we don't suffer a lot . I can see by your list of symptoms that you put up with a lot too!. I've also been unusual in staying at UCTD for 34 years now and not progressing to a more definite diagnosis and you might not either but it's definitely a proper illness in its own right!.
Has anyone suggested Behcet's to you as you have a lot of ulceration which must be painful!. I'm glad Colchicine helps you with it!.
I'm not sure if I'd want to stay with this Rheumy either but it can be tougher with doctors if we go to too many different ones!.
Has he suggested any other treatment and good he will see you again in four months?.
I hope you feel better soon and stay on this site for help and advice. Xx
Hi Misty thank you so much. I tried Cochicine once, four a day but I had the worst diarrheoa so I refused to take it again. I have agreed to introduce one a day to see how that goes. I used Hydroxychloroquine for over ten years and it took the edge off the fatigue. Since I went up to 600 mg then stopped completely I have felt and looked dreadful. I guess I just find it so difficult that for three years I fought against the Lupus diagnosis, then spent ten years resigned to having it. Yet in the last four months I have been told I have Fibro and hysteria by one Rheumy, MCTD by another and now UCTD. All three diagnosed using the same blood results?? It is frustrating and demoralising. I really appreciate your kind words xx
Hi Cecily. I'm so sorry to read that your appointment was like this. You've had a really rotten time with these consultants being so rude and with conflicting opinions and being so ill. These kinds of appointments are just devastating and traumatic as we go to them looking for help not judgment! But if you can find a way to pull out some positives that might help? First, that he agreed you don't have fibromyalgia and second that he agreed you do have a connective tissue disease UCTD, and that third that he didn't discharge you and you are to go back to his clinic (even if you would rather not!!).
I would try to ignore the 'mild' part as your symptoms are not mild and neither are most of us fellow UCTDers on here, many of whom are on immunosuppression, long term steroids etc, etc for their supposedly 'mild' condition! Maybe you could just tell your upcoming lot of specialists that you currently have a diagnosis of UCTD/lupus & APS and don't bother with mentioning fibro or any of the other stuff. Hopefully they can help address all the other difficult stuff you are battling and will feedback to rheumatology too and that might help you get back onto treatment for underlying UCTD. That awful hysteria label will get lost as new letters get written and go on your file and as someone on here said, most consultants don't really read the letters anyway. And the good ones know what to ignore if they do read them.
You have been through the mill with this. Honestly, I don't know why some doctors think it's ok to be so rude. In any other profession they'd be out the door if they treated customers and clients like they treat us. Really hoping that the next appointments help you move forward and better treatment is on the horizon. S
Thank you so much. I needed to hear this. Yes there were positives which was why I was so pathetically grateful to him. I used to be capable, astute and be able to reason with Doctors. Now I am anxious and readily phased by them. I do not recognise myself sometimes. We all need hope and positivity don’t we?
Many doctors have a way of doing that to us. Think we've all been there. I know I have! It's so hard to have hope when you don't know what you are up against. But all we can do is can try to focus on the positive stuff and the knowns and take it step by step and try to screen out the negative and unknowns for now. That's what I'm trying to do but it's easier said than done. x
That is so true. It is a journey I would not wish on anyone. I see others suffering and hear their experiences and feel helpless. The real positive of my last appointment was that I went prepared. I think had I not presented him with a list of previous diagnoses I would have been one of those patients in and out in five minutes. As it was I got him to listen and that is a start xx
I am so sorry Lou. It is so not good enough. Maybe we need to join together and make a complaint? I know it takes energy that we all lack but this just is not right. We deserve better xx
Oh, Cecily, my heart goes out to you. There is some great advice here, so I won't repeat. In the way of support I want to say I have been through the obesity thing every which way: blamed for the weight I gained with prednisone and gabapentin by the same doctors who prescribed it; accused of being fat when at a weight I could only dream of now, even after losing 60 pounds of pred weight with stringent low-carb diet; and I am too tired and in too much pain to remember the other examples. Certainly one was that overweight was the cause of my esr (sed rate) of 67 low for me. You understand. In any case, it is usually a mean, gratuitous remark of a doctor too lazy to seek a true diagnosis. You have my common cause in this and other complaints, but also support, caring, and sympathy.❤
Thank you so much, It is interesting that even when I lost seven stone my pain was no better. I do not want to be fat, sedentary and unhealthy but it is so difficult when the fatigue hits. When I was first sick I was on 15 mg mST twice daily together with 500 mg paracetamol four time’s a day, 600 mg Garbapentin am, lunch time and 900 mg at night. Seriously I was hardly ever awake and when I was I was incoherent. No wonder I put on weight. We do what we can when we can but it is not easy. My GP advised me to try the Juice Diet. It made me so unwell. I literally went quite yellow and spent days in the loo. Horrible.. I hope your pain and fatigue eases and thank you again for your kindness xx
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