Hi guys hope you’re well I went to see Dr **** in Tuesday He was very different to the last time I saw him I think he’s taken what his colleague said into consideration he said that bloods do not change over time and antibodies will always be there therefore took away the Uctd diagnosis and told me that I didn’t have autoimmune.
He told me to go back to my neurologist and look for wire of my ace levels are high. However he did tell me to continue my hydro medication which is a little bit confusing he’s also still seeing me guys end of January also confusing he told me that antibodies will always have to be there to diagnose any condition and I cannot come and go is it on something is that even if you don’t have it right now it will develop and future if they are not there then it will never develop which is complete opposite to what everybody right about this is the reason I thought maybe it takes 5 to 7 years for a diagnosis of lupusI actually feel really let down by the doctors I’ve been to see Dr **** Who stated that I had probably APS and I’ve seen Dr I am I am I like and he told me I had the best I’ve seen a run-of-the-mill no ologist who told me I had a mass I have seen and sarcoidosis specialist and he told me that I don’t have sarcoidosis even though I have higher rates levels to be honest with you I don’t think anything is Doctors there any good because they have been continuously taking my money given me all these diagnosis with out actually write them in a letter tell me what they like in the appointments and then not sticking to it in the letters I’m going to write a long letter stating everything I’ve been told by various different doctors the amount of money that I’ve spent and now Im at a loss I have no more momey left and no where else to turn
I don’t even know what to do regarding my diagnosis I spoke into my neurologist to tell him I do not have UCTD according to my rheumatologist I asked him if this could be sarcoidosis and he completely ignored the question and asked me how I was feeling even though in my appointment he told me categorically that this is not Stockwood he is not willing to write it in a letter or give me any kind of written confirmation.
I understand that people think I must be pleased actually I don’t feel very well getting worse and everything I’ve been at believe that till now just told in my last appointment is completely on true if this is completely untrue I don’t understand why I was sent for more bloods are guys because I already had antibody testing privately via Dr ****** Charing cross hospital seems to me that they took my money on my private appointment and then gave me plants by the NHS just for a reason for my five appointment this may not be the case but this is how it seems if the bloods do not change then why are you looking at them again if the bloods do not change then why does it take so long for diagnosis of lupus I have hundreds of pictures I’ve shown in the rushes facial flashing joint pains swelling I just completely shot me down and not before walking me to the door to pay for my appointment basically by the hand.
I’ve seen the best in London and I have no idea what’s wrong they just keep saying nothing and somthing between them all .
At a complete loss
I then asked about my thyroid antibodies because if antibodies show that you have disease then why am I not being treated for underactive thyroid and he said you don’t have a just antibodies 🤦🏼♀️
My partner wants me to go back to work I’ve spent all my mum’s inheritance I promise my children are holiday still feel like I can’t move I get up in the morning and everything is different so he made a comment that I might just have a neurological disorder which just take me back to ms or worse But I have had all my neurological tests.Anyway this is my last loan how do you want to thank you for your help really appreciate it take care love Jade
PS if so if this doesn’t make sense I’m using the voice activating is my hand is so sore xx
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Jade I really don’t know what to say. I think it all sucks for you and I can’t bear to think of the financial or emotional burden that going through all this has caused.
My thoughts, for what they are worth, are these. You say “the best opinions that money can buy” but here in Scotland we tend not to buy opinions for precisely the reason that paying money and good medicine don’t necessarily go hand in hand. Many of the best doctors, in my experience, won’t take patients privately for exactly this reason. Many of the best UK doctors are NHS only.
I have sought second opinions privately on three occasions over the past 8 years so I can’t say it never works. But then in devolved nations we can’t get out of area referrals on the NHS. I saw an endocrinologist privately in Edinburgh and he was great and seeing him got me my first NHS endo appointment which helped me too. I saw a rheumatologist privately in Glasgow earlier this year and this was a disastrous move for me - the man was utterly hopeless and thankfully mostly retired.
Then I saw Dr Price down in Swindon in September and her letter has somehow progressed the very poor NHS treatment I was receiving locally into proper care at last.
So seeking opinions privately can be helpful if the specialist is one with much NHS experience and whom we know to be doing this work for the sake of patients like us, rather than to up stats to fund research or further their own professional standing. I’m not saying that those you have seen are doing this - just that for me there’s a question mark over this as a possibility. We with chronic illnesses are so vulnerable to exploitation and, apart from Dr Price, I will probably never seek another opinion privately again now. I know much more about my autoimmune diseases then I did and I have definitive diagnosis at least.
Certainly I would always avoid London specialists because I don’t believe they are the best money can buy at all! I know we read a lot here about centres of excellence but perhaps you should just stick to NHS second opinions because you’re in England and you can.
Where this leaves you personally now I don’t know. I do feel you’ve been ripped off by London doctors with various dubious motives and hate that your partner is being unsupportive and that you have had to sacrifice your children’s holiday for no good reason. I feel like suing some of my NHS doctors and all of your private ones!
But then again my kids never got holidays outside of the UK and we would just drive down to south of England with them all once a year or sometimes one of us would take one of the boys away to stay with relatives. It doesn’t seem to have done them any harm at all! We are artist and care worker so never had the money to travel abroad so it wasn’t on our horizon and still isn’t- we haven’t even got passports now!
If I were you I’d stop for a while and regather yourself, treat yourself to lovely little spoilers, use your dictaphone to be creative with your anger. Many have been shafted by the medical community and feel as you do so you’re certainly not alone. Xx
Thanks twitchy I really appreciate how often you take such thought into your replies to myself and others ! Just please know I don’t know what I would have done with out you guys !! This really has been the hardest time of my life and you have made it bearable in my darkest moments!
Dr C was so confident in his first diagnosis of uctd and now dr sana is challenging it he has backed down. I’ve read time and time again it take on average it takes 7years to diagnose lupus or a like.. if it’s not bloods/antibodies and symptoms your waiting for then what takes so long .
For some reason this reminds me of my old GP. He was great mostly but sometimes he would get infected by doubt when consultants overrode him. And I recall being really relieved when he got into my hospital portal and worked out that my lumbar puncture showed paired bands meaning a systemic process was occurring. I felt vindicated somehow. Then, next time I saw him he had received my neurologist’s letter and was really grumpy with me and told me nothing autoimmune had shown. I left and cried about his brutal change of attitude towards me. Fortunately his first opinion was the right one and he did apologise when I left. Basically he was just a GP!
Many times now I’ve had doctors completely change their behaviour towards me after a colleague of theirs or a test result has disproved something they previously thought - and it really hurts. Lately the opposite has happened for me but I’m ever wary. I’m already panicking that my dermatologist will tell me on Monday week that my lip biopsy showed absolutely nothing and may feel that she’s stuck her neck out for me for no good reason!
My measure now is whether a doctor has the courage to stick to their convictions or the honesty to explain that they think they have got it wrong.
And also to grasp just what’s at stake for us when a diagnosis changes or gets retracted.
If a doctor thinks they have got it wrong then they must climb down honestly about why. This chap of yours sounds like his main concern is for his own professional standing with his colleagues in his own world - not for you, his patient. I would honestly not touch him with a barge pole! X
PS Paul is correcting your post and comments because we aren’t supposed to use doctors names here, especially when our stories paint them in a negative light.
Just edit to correct yours to say Dr C and Dr S if you can! Xx
My heart goes out to you for many reasons. You have had such an unfortunate experience. I don’t know if this will help. But my view from my experience and others’ is that some illnesses do not express themselves in ways that even the best of doctors can understand. It is not your fault. With autoimmune diseases it can take time. They start out with a little fatigue and joint stiffness and within a few years years the patient is in the emergency room with chest pain from myocarditis.
You are an unusual case in that you have an abnormal MRI that is not progressing and neurological symptoms. My sense is they have been watching you to see if you have APS or a lupus-like condition. It is very complicated about the blood tests. In lupus, for example, they are not going to diagnose without a positive ANA or a positive kidney biopsy. That is because the antibodies are part of the disease. It is a disease that produces these antibodies.
On the other hand, people can have certain symptoms and negative antibodies and still be diagnosed with a disease. Sometimes people have unexplained stroke and the doctors conclude they have seronegative APS. Graham Hughes proposes that they may not have isolated an antibody yet.
You haven’t had a clot and your antibodies for lupus and APS are all negative. You have experts in the field. Dr ***** has decided that at this point your disease does not appear to be autoimmune. He wants you to continue with the neurologist. That makes sense to me. Even if you had low level CNS lupus or APS with neurological signs, the neurologist would be the one to provide certain medications.
Maybe the best thing to do is treat your current symptoms and wait and hope that they do not evolve into something more serious. Time is sometimes the most important thing when it comes to knowing an illness.
I am sorry things have been so unclear and at such a hard time of your life.
Another person I don’t know what I would have done without you putting my head straight in my darkest hour and my anxiety gets the better of me.
I do try to believe in medically safe well I hope I just don’t trust the doctors I see.
Non of them are particularly interested in me. Dr Cruz completely changed his opinions it will be interesting to see the letter as I have his other findings in my first x x x
Ohhh, Jade, I feel so very sad for you going through this. I totally agree with TT's comments and - as always! - she's summed it up so very eloquently. But please, before you rush into anything, most of all going back to work, take some time out to reflect on what's happened.
Most of all I can understand your fear and devastation that the Drs seem to be saying 'your health is ok move on', when you still feel very unwell. Where to go from here? I just don't know what you should do, to be honest - I hope others can bring forward suggestions. And, please, don't just disappear - I for one, like to see your posts. Stay strong, for yourself and your family. xxx
Hi Jade. I'm fine, but how are you? You seem to be getting your head around things now, I hope so anyway. There're lot of people with you on this, so please stay strong. You are better than these weak-willed, dumpty Drs!! Feel free to PM me at any time if I can help. xxxxx
You still have support here. We are not abandoning you, and your doctors aren’t either. You will continue to see your neurologist and your GP. You have another appointment with the rheumatologist, which gives you an opportunity to ask questions.
Your diagnosis may have been changed, but you will still be cared for. I am sure of that.
Jade - if your rheumatologist brought up myasthenia gravis, he is hardly dismissing your symptoms. Could he be saying that after observing you a for possible connective tissue disease he now thinks myasthenia gravis is more likely. He doesn’t want you off the Plaquenil until the neurologist weighs in. Now it makes sense why he wants to see you for follow up.
Good to let the details of the visit settle like you have done.
He just said there are other autoimmune disorders such as myasthenia gravis but I have asked my neurologist before and he said no but he may reconsider x
Probably a good word. Maybe an educated guess. But to do anything else without enough to go on is wrong. I often feel the doctors should have spent more time explaining the difficulty of your diagnosis and why. Your situation would be considered complicated by anyone involved.
You have good recent to feel let down by doctors. Anyone would in your position. It isn’t fair that they can’t simply do another test to confirm what is wrong.
Yes, that is important to remember. I think Dr ***** was referring to the conditions he was ruling out. Maybe I am wrong, but I think he was saying that he would expect more evidence on exam and positive blood tests by now. That is just his clinical judgement.
My point is that whether the blood tests are highly significant depends on the disease and the whole clinical picture.
I think twitchy toes offers great advice. Stick to NHS doctors for second opinions. Keep being followed regularly by neuro and rheumatology and keep taking hydro for it may very well be working by keeping your disease at bay as seen in no further neurological changes in your brain scan.
As to what to do now for your symptoms I can only again suggest trying some holistic things. Gentle exercise, healthy diet, good sleep hygiene, meditate and look for small joys daily. If you are suffering from any depression, PTSD or anxiety please address these by seeking a psych evaluation. It is amazing how our physical and mental health are connected. It is a bidirectional highway. When we are physically unwell our mental health suffers and when we are mentally unwell our physical health can also decline. Treat your whole self. It is the only way to obtain holistic wellbeing.
I actually found that getting back to work has improved my physical and mental health immensely. Maybe start back slowly. If you worsen than stop again but you have not seen improvement while off so maybe a change in your schedule might offer you a healthy distraction from your pain.
Have you noticed it is a common thread on these forums that symptoms are always worse at night? I think we notice our symptoms more at night because we are not preoccupied with external stimuli. While off of work I noticed I constantly focused on my internal sensations too much and thus always felt worse. With a busy day I have less time to focus on every ache, pain, tingle and this has allowed me to feel more well.
keep checking in with your NHS team and keep checking in here too. Try and believe that right now you are medically safe. You have many specialists following you who have deemed that at present your body is not in imminent danger. Your brain has stabilized, you are tolerating HCQ well, antibodies are quelled presently and you are surrounded by a loving family.
I am in America where it is thanksgiving and I am on a gratitude tour this year where I try and remind myself everyday to be more grateful for what is working rather than what is broken and this practice has really changed my life. So today I am grateful that Specialist will continue to follow you. I am grateful your disease progression seems to be stalling and I am grateful you still check in here to say hi! Happy thanksgiving!
I hope so! Don’t worry honestly I do all the self helping I can do and I generally full apart on here because I don’t want to show it to anyone else I think even if my partner read these posts I write he would be shocked.
I’m generally strong I just feel as if my light has gone out since my mum died like I have no more fight left in me at the time I need the most strength it would
Be so much easier if I could get a diagnosis so I can move on from this uncertainty xxxx
Is there a grief support group in your area? The loss of a parent leaves such a great hole in our hearts. being around others who have experienced a similar loss can be very cathartic. Xoxo
Well, she got clinic letters with possible diagnoses. That should reflect their thinking, right? True doctors may not share the most serious illnesses until those are confirmed.
Maybe they should have been clearer with Jade that they were « speculating » and that they would need to watch her over time.
What is happening here is about as hard as it gets for both patient and doctor. So much uncertainty.
This is true but I think the arrogance of the doctors I’ve seen are so used to being right they tell me exactly what is wrong with me before the bloods and then seem to back peddle afterwards xxx
I’m sorry if the answer to this is obvious from other posts that you’ve made but when you say about positive thyroid antibodies have you ever seen an endocrinologist for this? It may seem strange but over the years I’ve discovered that no matter how good a doctor is in their own field they often know nothing about any other fields! I had an endo in London who looked at my spectacularly high ANA and actually wrote in a letter that this wasn’t relevant ... what he meant is it wasn’t relevant to his speciality so if you have asked rheumy about a positive hashi’s test they may mean it’s not relevant to their particular area of medicine.
If you’ve never been referred for the positive thyroid antibodies I would suggest popping on the thyroid UK page here and asking if anyone can recommend a good NHS endo in your area and get a referral from your gp. I’ve not been in there for years but they were fantastically helpful when I was learning about thyroid issues. And you’d be amazed what it can affect - thyroid basic controls how your entire system works and if mine is off I feel absolutely hideously ill. It took me having to employ some heavy persuasion to get thyroid meds when mine was positive but once I tried them everything suddenly showed up on my blood tests. I then had a recommendation for a fantastic local endo and he was the first doctor who looked at the entire picture and was amazing. If you’ve not been down that route then fingers crossed you can get a referral to a good one even if it’s just to rule out thyroid being an issue.
Great point Mifford - we can so easily end up in the wrong part of town by default. This happened to me with neurology.
The professor of vascular medicine at the scleroderma clinic I attend has copied her clinical letter about me to endocrinology apparently because I told her that I felt my TSH was not suppressed enough for me to feel well. She agreed this was a strong possibility but said “let’s ask for endocrinology input about this shall we before deciding to raise your dose of Levothyroxine”.
This multidisciplinary approach is how it should work - but rarely does of course. The reality is that we are often seeing the wrong specialists.
But I have normal tsh t4 t3 so have no reason for medication my thyroid is functioning correctly even with the antibodies I can’t even get my gp to repeat the tests xxx
My FT3 was bottom of the range but still in range, my FT4 was absolutely fine and my TSH was 2.6 so we’ll in range. I was feeling awful and convinced there was an issue (this was long before I discovered all about lupus etc) so persuaded them to try meds ... next test my TSH shot up well out of range. Nobody can explain it. Even now I have to keep my TSH at a narrow band between 0.3 and 0.9 as I’m so reactive. Also if I’m hyper I gain weight and get all the hypo symptoms and if my TSH goes up so does my FT4, if it goes down they both go down.. they are meant to go in opposite directions. Your body can do strange things that don’t always fit into a ridiculously wide range on blood tests.
Do you know what your actual results were or have you just been told “normal”? If you can get the numbers it’ll help but I’d say definitely post on the thyroid uk board on here with a list of all symptoms and blood test results etc.
As I said I don’t know if it happens in other illnesses and I obviously can’t diagnose but the eyebrow thing is definitely a thyroid marker and if you tested positive for hashi’s then you absolutely don’t have a correctly functioning thyroid. I doubt it would explain everything and you could have more than one auto immune going on but hashi’s can do things very unique to it and not in line with non hashi’s thyroid. I would definitely think it’s worth seeing a new gp in your practice if you can and trying to get an endo appointment on the basis of the autoimmune test to ensure that everything is properly checked as they will also look at the entire endocrine system not just thyroid. Plus they test vitamin d, calcium etc. Mine understood the entire systemic process better than any consultant I’ve had so far and it was him who pushed my gp to refer me to rheumy - his comments carried far more weight than me keep saying it. I may have just got lucky. It could be that the hashi’s really isn’t relevant but at least you’d know it was an informed outcome from someone actually in that field of medicine.
But seriously I think it’s worth you considering just putting a post on that board to see if you get any fresh ideas of where to head next even if it is only ever one post and you never go back.
Actually ignore the eyebrow bit .. I think I’m confusing two different posts. I was talking to someone else yesterday about thyroid and their eyebrow and today I’m still in a fog waiting for this mornings steroid injection to fully kick in 🙈. Sorry if that bit was confusing ... but if you ever find the end of your eyebrow disappearing then it’s a thyroid thing 😂😂😂
Tpo range was under 50 when mine was done years ago and mine was 96 - my gp told me it wasn’t positive enough. My endocrinologist told me that was rubbish and it’s a yes no test so only needed to be 51 for a diagnosis. Definitely try and get a referral for an endo if you haven’t seen one already on the basis of a positive hashi’s test - thyroid can go up and down like crazy so not testing again with a positive Tpo is ridiculous so if they won’t refer they should at least retest. Even if you aren’t hypothyroid at the moment the positive tpo says it needs to be properly monitored. And if I had a TSH of 2.65 now I’d barely be able to function so it depends on what is the right level for you irrespective of the “normal” ranges.
In the end I persuaded the consultant I was seeing in London to trial meds with me when I looked a junior doctor in the eye and told him that as they had already pointed out that I was highly reactive to meds that if they were right and I was wrong the likelihood was I’d be on meds for a week, feel awful and stop but if I was right and they were wrong they were ruining my life and they weren’t the ones having to live with their decision. I’ve never been that confrontational before but it worked in that case thankfully - I’ve found generally it’s better to massage their egos and ask their opinion having steered them slightly down the route you need them on works better but sometimes pointing out that you are having to live with their decisions in a gentler way isn’t a bad thing and gps are notoriously bad at accepting that they don’t have the expertise on thyroid. Lately phrasing it that I’d like to get *insert illness here* ruled out seems to go down well with the current gp. It shouldn’t be that way but if being sneaky works then be sneaky. Oh and the London consultant, who was “top of his field”, was very pleased with himself when my blood tests showed my thyroid once I’d gone on meds ... apparently he’d suspected it all along. Of course he had 😂😂😂
It would be interesting to know how many people had symptoms before they had a positive ANA test, and how long they had them for, and how often the reading changes once it is positive. Some people in our local lupus group said it took 15 years to turn positive, and all that time they had symptoms. A proper study on that would be great.
It's a real problem if a doctor won't treat on presentation but only blood tests. Presentation alone should be enough to warrant medication even if they can't give you a definite diagnosis.
Yes why is this so called expert, “the best that money can buy”, suddenly so preoccupied by guidelines invented (as my first rheumy used to say” by a bunch of rheumatologists?!
ANA can fluctuate - mine was normal for all the time I was on dmards and steroids, then came back a clear positive with unusual pattern leading to me being diagnosed with Sjögren’s by lip biopsy. Since then (and it hasn’t been retested for 18 months now) it went steadily down to weak positive. Dr Price only refered to the higher reading.
Anyway the point of the Hydroxy is that it modifies the disease so surely it will affect the antibodies too for some people?
Thank you very much for providing this very interesting and extremely informative article. It states that 20-30% of people gave negative ANA test results despite disease activity at the time of testing and despite them previously testing positive. The rheumatologist I saw a year ago gave me a negative diagnosis for lupus purely on the basis that my ANA test was negative. He ignored or dismissed all my symptoms, my history of auto-immune diseases, my family history and the fact that I have interstitial cystitis which is associated with lupus. He ignored all of this and proclaimed that I don't have lupus purely due to my negative ANA. If I see him again I will print off this article and wave it in his face!
Hi, I'm not an expert, but the ANA is the antibodies, Antinuclear Antibodies, so if they test negative it means they are at a low enough level that they don't register in the test, though they may still be there at a level lower than the test threshold. So yes, it is the amount of antibodies in the blood that changes. Our Rheumatologist tests for them every six months, and they have changed from positive to negative over the last two years. It's problematic. I think the rule of thumb is if you have tested positive before then you don't need to be tested again, as they can be assumed to be positive once they've been found once. They can take years to show up positive for the first time though, and that's after years of symptoms. All the best.
I can’t express myself better, especially Twitch, or offer advice on what next, but I do want to send you much love, hugs, and sympathy.
Please do write or complain in any way you can about the expense you’ve incurred in all this, the methods they have used and the outcomes. I’m grinding my teeth in anger for you. x
Oh Jade, I'm so sorry that the appointment went like this and now you're left more confused than ever. It is so hard being told, 'great news, there's nothing there, off you go and get on with life'', when you know that something really is wrong, and getting worse, and you can't get on with life as it was.
It seems for a lot of us, that uncertainty is such a part of this autoimmune game. So many others here have had diagnosis taken away too. And that scares me as someone new to all this too. But you still have your NHS appointments and your great neurologist, I think? I'm also staying away from private appointments now and just going to take my chances with the public health system here. I may well be in your shoes in a few weeks!
Sending you lots of strength and keep on posting here. We need you!
Thanks salzer I really appreciate your kind reply ! I really was relying on him to help my first appointment he said I know there is something going on with you and I’m going to find out what it is I will look after you .. next time he was a lot less compassionate and seemed really annoyed if I’m honest ! Xx
I haven't fully read your post, but on the point of your consultation removing your diagnosis because your antibodies have gone negative - that's is crazy.
My antibodies have become negative since diagnosis and my consultant Dr Ellie Korendowych has put down in writing that this can happen and that I definitely still have Lupus.
This is what I also thought to be true but he was very clear and wouldn’t hear of it. Told me antibodies do not come and go they are always there 🤦🏼♀️🤷♂️ I’ve read so much saying the same as your doctor xx
I can’t add anything more than what has already been said but please know you have my sympathy, and support and I’m hoping and praying you will soon get the answers and diagnosis you so badly need.🙏🏻🙏🏻 Thinking of you Jade and sending hugs. 🤗🤗💕💐
Sorry not to have got back to you sooner, I've been feeling under the weather myself. Nothing serious just overdone it!
Your Rhemys opinion contradicts that expressed in the LUPUS UK publication -lupus diagnosis and treatment, which states that "patients with previously sero-positive lupus may not be consistently positive for ANA".
It also contradicts the information within the lupus encyclopaedia which states "about 20% of people who have SLE will develop a negative ANA during treatment".
I can send photos of both of the above, but don't know how to post them. If you can advise or send me alternative contact details by private message, I will gladly send them on.
Thanks for your reply I think it’s because I have negative antibodies and negative Ana in fact it’s never been positive it was my brain lesions presentation that sent me down the lupus route xx
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UCTD/Lupus/Antiphospholipid Antibodies
Still UCTD
Diagnosis of lupus but feel completely fobbed off by my rheumy!!
