Hello I’m on route now to guys hospital anything I need to remember? ❤️😂
Wish me luck x
On route to guys : Hello I’m on route now to guys... - LUPUS UK
On route to guys
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Buckley123
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•
Good luck, Jade. xxx
Not going so well trying to say I have functional something or over and stress ... but he’s sending me back to dr d Cruz and I’m having the blood work.
X
Who did you see? K
Dr ***** 🤦🏼♀️ he basically said I could have fibromyalgia and stress related ptsd .. and some people have lesions for no reason.
He disagrees with doctor d Cruz he said we can all make mistakes ..
So I’m going back to doctor d Cruz xx
Good idea to go back to Dr d Cruz for clarification. You have been through so much. I can’t help but agree with Roarah that reducing stress would benefit you no matter what the cause of your symptoms. Most people I communicate with here are helped by various techniques — CBT, ACT and talk therapy. Chronic illness is hard. We all need support.
Xk
Thanks Kay yes i going to look into cbt as I’ve been told my every doctor bar one that they think I suffer from post traumatic stress xx
• in reply toBuckley123
functional neurological disorder /FND? There’s an HU community for those diagnosed with this.
Buckley123• in reply to
He thinks so .. but it’s literally the opposite to what dr d Cruz has said
Don’t you just love it when they do this xx
And to what my neurologist has said xx
Usually this is not completely opposite. You need to get Dr d Cruz’s reasoning. You are a very unclear case, I think. Clear you have suffered a lot.
Thanks Kay
Honestly
I have dr kaul saying aps hyper mobility
Dr ***** saying lupus sjogrens
I have dr saying fnd and fibromyalgia
Dr ****** saying ms
Dr d Cruz wrote a letter uctd with a very detailed explanation
Which doctor ****** can find no anything to support his findings
Dr ****** is supporting uctd
And my bloods say raised ace which dr ****** said isn’t really here nor there .. 😂😂😂💭🤦🏼♀️🤦🏼♀️🤕🤕 xx
All your doctors could be right. It is possible to have both Fibromyalgia and uctd and eds all together. Hang in there. You can treat each ailment as they occur even with multiple diagnosis. I have APS , a positive Brighton scale, lupus, irrelevant pfo with ASA and fibromyalgia from stroke induced inflammation and infarct. I have separate treatments and doctors for all these and I feel pretty well too.
I found out when my husband had rectal cancer that you can have two or more primary cancers simultaneously, he had three stage one cancers at diagnosis. The same is true with autoimmune issues. We can have Uctd, heart disease, and cancer simultaneously too. Focus on asking how to improve each set of symptoms. Ask how to control the FND symptoms. Continue to take the HCQ for the issues Dr. C diagnosed and so on.
Xo
Sorry to hear about your husband joe is he now xx
My husband is NED at the moment and three years is a great prognostic sign that he will continue to be well, thank you for asking.
I think you want to ask Dr. S or your GP after his letter, how do doctors help patients like you to feel better. Ask about lyrica, an FDA approved fibromyalgia drug, ask about CBT, ask about doing scans regularly due to your mothers history. Also ask about differential diagnosis potentials.
Going forward make sure your metabolic, lipid and CBC are tested regularly as if it is fibromyalgia heart disease and stroke are risk factors. Ask about trials for fibro patients their are some for it is an area of interest for many scientists. They know it is real, debilitating and even portentially deadly they just do not understand what it is yet that is happening and only have limited treatments because of that.
Feeling better is the goal. I am hopeful that there is a way you will meet that goal. HCQ might kick in soon. Adding another drug, who knows maybe a steroid or maybe something else together will help even more.
Xo
This is true
They seem to throw these things out there with no treatment plan and that because they don’t know what’s going on my bloods are not back yet 🤦🏼♀️ I guess muscle weakness can be there one min gone the next ? Not sure all the others seem to be able to go up and down. Tbf to dr sana I was feeling better today and yesterday not so much now I’m shattered
But I would hope they understand how these things work although I will wait for his latter they seem to be kinder in the letters 😂🤦🏼♀️👋 xx
I have to say the diagnoses you have are text book worthy. If you read about MS, CNS lupus and APS, it makes sense they are perplexed. But it really is not fair! I just feel awful for you. But Roarah is correct that there may be truth to what all these doctors say. You are a medical dilemma.
XK
I recall hearing bad reviews about that man sons years ago. He is known for his poor bedside manner.
Yes I have heard this too although I made him laugh I find this helps to crack them he was still very dismissive xx
• in reply toBuckley123
It’s very difficult to get clarity with autoimmune diseases and PTSD overlapping. Seeing lots of different specialists at same time in different hospitals (or even the same ones) often just creates more questions than it provides answers I’m afraid.
I’m guessing it’s very likely that you do have PTSD as a result of what happened to your mum. Then all these different opinions, including some of ours here, just compound trauma.
I do think PTSD can sometimes cause some, if not all of these functional disorders but it can also trigger autoimmune diseases. What worries me is that people diagnosed with Fibro, ME, IBS and FND are all too often stigmatised by the medical profession and it becomes much harder to fight our corner - particularly when they are so over diagnosed and some rheumatic diseases are so underdiagnosed. Perhaps you just need to work out which doctors you instinctively trust most and stick with them?
Sometimes people with diseases such as Parkinson’s, APS, MS, RA, Lupus and Sjögren’s and even cancer are diagnosed with overlaying functional disorders. After all it’s a traumatic event having onset of any of these, let alone misdiagnosis or going from being healthy to very ill. It is also very traumatic watching your mum go through what she went through and I’m sure this shouldn’t be underestimated either.
So if I were you Jade I would read up about FND and join the HU community to learn more about people’s experiences, treatments that have helped etc. Then you can decide whether or not it feels like a good fit for you and also fight to access treatment or rediagnosis. X
Buckley123• in reply to
Your right
It’s just frustrating
I think I’m going to stick with dr d Cruz as I wasn’t meant to see sana today
And my neurologist dr Kidd
And that’s it x
You will be pleased to hear I have a gp appointment to discuss cbt
It just seems to be a ride you can’t get off and just goes round and round xx
• in reply toBuckley123
Tell me about it.. and that’s even with diagnosis of Sjögren’s and Hashimoto’s no one can argue with!
You are so right to just stick with the docs you trust and to try and address the PTSD in the meantime. I had it after a horrible time when my first kid was born and there were so many physical symptoms with it. A few sessions with a therapist helped very quickly and it has never bothered me since until this year when I've been sent all round the houses with doctors too telling me I have one thing, then another thing and then no you're imaging things, you have nothing. So stressful that I felt it might be coming back! Only two doctors out of so many actually listened to me and read my notes properly and they both came up with the same finding - mild lupus/uctd. And one of those was Prof D'Cruz. So that's what I'm going with now too.
Hope that you are doing ok after such a stressful day. You've been through so much. S
Thanks salzer
You just have to stay strong 💪 having to convince doctors shouldn’t be our battle. I did kind of bite his head off when he said ptsd
Not because I don’t have it but because I feel as if they try to sweep it under the carpet. I told him (the poor man)
I think it’s a normal reaction after caring for my dying mother for 8years constantly thinking she’s going any minute living in constant fear to then watch her lungs fail and have a heart attack only to be looking at me for help to then be told I had the same thing that killed her two months later (ms) to then have it taken away and yet they continue to just throw things out there like lupus ect like it’s not life changing and then take it away in another breath.
Then mutter ptsd .. not bloody surprised really I told him you should be able to sue doctors for distress
I think then we would all me millionaires 😂😂 anyway he didn’t say much after that ... I got my blood tests and he said I think you will be better back under doctor d Cruz I thought yeah I bet 😂😂🤦🏼♀️
He was nice enough but expected me to know nothing I think 🤔
How are you xx
Good for you! I can imagine his face when you told him that. That's made me smile thinking of you putting him straight. I'm doing good thanks. Just following Dr DCruz's plan and seeing what happens. Once I got his opinion and diagnosis, so much stress lifted and calmer me returned
Some of those doctors would make you crazy if you aren't to start off with! Hopefully you'll be able to sort out the CBT for you though, not because they suggested it. Honestly I avoided it for too long as I've never much liked the medical profession, but it really worked and got me through. Was 15 years ago and the baby is 6ft now! X
See my comments above
cpops• in reply to
Sticking with one doctor and having the wrong diagnosis is also a mistake. ******* gave me various labels but totally ignored symptoms that did not fit his diagnoses. I was.not given appropriate treatment and almost died from GI complications. He also completely ignored the inflammatory arthropathy until it was so bad it caused irreversible damage to my joints. I had been seeing him for 15yrs and he watched it happening whilst under treating me.
Interestingly the lead clinician at the Lupus Clinic reviewed my records and also disagreed with his view and management.
On the other hand you have people like Dr ***** who discriminate against female patients and slap functional labels on them. How many men have you heard of being dismissed in this way? In my professional and personal experience I have not come across any.
My advice to Jade is not to mention the trauma she has suffered as it is giving them an ideal excuse to dismiss her symptoms. All AI conditions are exacerbated by stress so that would account for it occurring at that time.
Hope this is helpful x
Interesting comment
I’m under D Cruz and I’m
Literally pulling out teeth trying to get some decent medication. I’m literally falling apart and they don’t seem to want to do anything. 😡
❤️
It seems we can’t win
Unfortunately my mum passed two months before all this started for ms so it’s just something that was in my my notes and that’s why I had a brain scan and diagnosed with ms to then be told it isn’t and then nothing really
But tbh I wish it wasn’t in my notes x
Ask your GP to refer you elsewhere and not to mention any personal trauma. Perhaps see a female doctor. It is an age old problem and one which must be addressed. I have a plethora of medical evidence but I have come across it too. If anyone gets treated in this way they should register a complaint. It is the only way to make them change their discriminatory behaviour.
They should refer to a psychiatrist/psychologist to have this ruled in or out. They are acting out with their area of expertise to slap this discriminatory label on you.
• in reply tocpops
Yes I agree with you to an extent. With hindsight mentioning trauma, particularly if you’re a woman, is risky. Neurologists, in my experience, tend to associate trauma with hysteria/ FND. In fact according to a book I’m reading just now, Doing Harm by Maya Dusenbery, women with MS were all thought to be suffering from hysteria until relatively recently. Freud played a great contribution to the inherent misogyny a lot of doctors of both sexes are still using as their medical model today.
However physical or mental trauma can also be trigger for autoimmune diseases. And as Jade has already mentioned it and it features so large in her life with the immediate hereditary connections as a possible connection - I think a really good doctor will take it as important fact but also be able to see beyond it.
So perhaps it’s best for her to just come out with it as she already has and if a doctor is a true detective and a “keeper” then they will see the clues be able to look beyond it.
I have seen two (male)rheumatologists who are listed on the Sjögren’s register who failed to help me at all - neither could identify the seronegative variants of Sjögren’s or interpret my bloods to diagnose me correctly.
The first was thorough but told me that I had no connective tissue disease because he took my immunology bloods while I was still on a six month period of taking oral steroids. I’m very susceptible to steroids and other medications - in both a bad way and a good way. He was also rude about the London Lupus Centre.
But while I was in the full heat of fury with him, having later discovered that I absolutely had Sjögren’s and immunology pointing to other overlapping CTD, someone else pointed out that this rheum had saved her life by identifying her very serious and severe vasculitis.
From this I learned that one person’s bad doctor can be another’s great doctor.
Melba1• in reply to
Wise words twitchy x
Buckley123• in reply to
This is also true twitchy
Thanks for this your right doctors worth there salt should know what’s what.
I do wonder about ms you know.. if I didn’t have so much joint pain I would be convinced but I also get a lot of muscle pain which can be hard to tell the difference.
My ace levels are raised this is also seen in ms ..
I just don’t know.. let’s hope not I should hear back from bloods if there’s anything next week.
Jo doctor seems to believe in seronegative anything.. not sure why this is when you can see inflammation in my scans but not in my blood work surely seronegative would be the correct path and then peace together what’s I match the best symptoms wise and scan wise..
I myself think I match best with lupus or uctd lupus like could be sjogrens but I genuinely Believe it’s lupus .
Even when I was diagnosed with ms I said no it’s lupus I’m sure of it 🤦🏼♀️🤦🏼♀️😌 but I’m not a doctor although I feel I missed my calling 😂
How are you today ?? Xx
• in reply toBuckley123
Just a thought you might want to consider - I’m seeing Dr Elizabeth Price privately in Swindon in 2 weeks time.
She’s a general rheumatologist with special expertise in Sjögren’s, president of the BSR - a woman, a fresh pair of eyes and perfectly aware that seronegative Sjögren’s (diagnosed by lip biopsy and systemic. symptoms - not necessarily severe sicca) is potentially as severe as seropositive.
At a conference last year I asked the Scottish patron of NRAS and president of EULAR - Professor Ian McInnes - why he thought that seronegative rheumatic diseases were still so misunderstood. His special interest is in PsA - almost always seronegative.
He said that most of his colleagues of any international standing understood only too well that seronegative RDs are just as much of a concern, even source of dread, because they are slippery and much harder to diagnose and treat - but potentially just as severe.
I think Dr Price would agree with him and she’s not that far away to travel to see in Swindon if you’re going to or near London anyway.
As far as I’m concerned these are the two UK rheumatologists I’ve met and would trust most now. Professor McInnes doesn’t take private patients which I feel is probably a good sign - and his clinics are in Glasgow. So it’s his opinions I’m led most by rather than suggesting anyone here tries to see him as a patient. He’s also very kind but direct and seems to genuinely care about his patients.
Dr Price only charges minimally to see patients from all over the UK on one day a week - amazing for what she gives back. Both are capable of thinking beyond the immunology bloods box if they need to.
And probably quite significantly to me - neither of these rheumatologists appear to have an underlying agenda and or choose to work at a London centre . And more importantly I’ve never yet seen any posts on HU communities which cast them in anything but other than good light.
Buckley123• in reply to
Thanks twitchy
Il keep a note of them definitely
But for now I’m going to dance with the devil I know.
See if I can get any further and if not I will not give up on finding what’s wrong xxx
I think there are, unfortunately, many times when doctors cannot know with certainty what is wrong with a patient. What baffles me in your case, Jade, is that you have been give many different diagnoses. Are you sure you are not confusing “possible” or “rule out” lupus as a diagnosis? It is hard to imagine any neurologist giving a lupus diagnosis on the basis of an MRI.
Dr. Kaul told you that it was “possible” you had seronegative APS based on MRI and the MRI, right?
I actually do not hear that doctors have not taken you seriously. You have had three MRIs and other scans, ENT consultations, and the opinion of experts.
I think it is unsurprising that doctors have different opinions about what is wrong with you. Your situation and distinguishing between APS, CNS lupus and MS is one of the hardest diagnostic challenges there is. You are getting “opinions,” not facts. I think that the fact doctors have not explained all this to you has made your very difficult situation even harder.
The way the doctor handled a change in diagnosis was very upsetting. But he has to call it as he sees it.
There is no agreement as to what constitutes UCTD at this time. So both doctors can be right depending on how they conceptualize it.
I think cpops use of the word “indisputable” is apt here. You are not an indisputable case of any of the conditions that have been considered. That is why they are disagreeing. I really feel for you. And I have to say in looking back my doctors way of handling my mild and uncertain case makes sense.
At this point, I think you have to accept that without a positive test for autoimmune disease some doctors will not attribute your symptoms to lupus or UCTD. No matter what the diagnosis, your illness will be treated according to symptoms. Dr d Cruz is doing that.
Remember that these diseases evolve. That will probably be what determines which doctor is correct.
No doctor can give you certainty right now, I suspect. But we can help you live with this uncertainty. It is, sadly, not uncommon with these autoimmune diseases.
Xk
Thanks Kay
Your right
Ms was a diagnosis and if I didn’t look further for a second opinion by a ms specialist I would still believe I have ms.
My ms neurologist told me it’s definitely not ms looking at just my brain scans
Without tests
He was right all other ms tests came back negative
He told me ‘have you heard of lupus ‘ I’ve seen this before in lupus patients
All bloods came back negative he blamed it all on migraines and stress and ptsd.
I then sort another neurologist
Who has tried his best to help me with hydro. Has given me bloods that show elevated ace but he still says not sarcoidosis
My muscles twitching a lot came up on some tests as interference and my neck spasms I asked if I had Parkinson’s he said no 😂💆♀️
My nerves don’t seem to be damaged According to tests just irritated by inflammation what’s causing it no one knows but hydro will help
I also see dr kaul who said ‘ to him I screamed aps ‘ and I should take a aspirin a day. And hyper mobility.
I see dr d Cruz who believed I have uctd and was checking for moytits
Due to swallowing issues and muscle weakness in hips shoulders and neck
And then dr s said nothing wrong with me .. if I had something it will show its self in a way no one will and can disputes and then treat 👍😂🤕
This is how all this has happened
It’s annoying because hardly any bloods had been taken until last week well not compares to what was take last week so how do they no it’s nothing
Since then I’ve been told I have pcos so it is slowly coming together ish
But it would have been easier if no one said anything until all the tests had been done
Basically in fear of what happen to my mum made me look relentlessly for a answer to try and prevent myself heading the same way
But it has caused me so much more stress then not xx
Well, that makes a lot of sense. There is a big difference between “these can occur in lupus” to “you have lupus.” Dr d Cruz thinks he has enough information to treat and see if it helps. But he is not giving you high dose steroids or anything that has big side effects. Dr. Kaul’s “possible APS” is not inconsistent with what Dr d Cruz said in a sense. I have UCTD with am aPL positive. Dr. ***** may be saying that he will not diagnose at this time. He did allow for the fact that you may develop more symptoms or have positive bloodwork.
Doctors have different styles and use different terms in describing unclear autoimmune cases. Read Dr. Michael Lockshin, ANA negative lupus. He is an American lupus and APS expert and colleague of Graham Hughes. He describes the dilemmas very well so that patients can understand.
Xk
Thanks Kay it’s very confusing I expect them to know but it’s seems they do not even when they say they do xx
I am waiting on the bloods now we will see who’s right 🤦🏼♀️
And as you and many others say if they don’t know they shouldn’t just put it down to stress
They seem to go from ms to possible lupus to stress and migraines
Which makes me trust no one .. that with no explanation of brain issues ect xxx
It is confusing. Migraines can cause these changes. And they can cause all sorts of non-headache symptoms. APS can cause migraines. People with lupus can have APS.
Doctors are knowledgeable professionals, not Gods. They cannot know everything. With you, they are trying. Keep asking questions.
Thanks Kay I really appreciate your constant support you really have no idea how much I need this forum xx
How are you xx
I hope we have all been helpful. You have had a particularly wrenching situation with your mom dying and then all these confusing symptoms and diagnoses.
Hang in there. You are being treated at a major medical center by good doctors. Focus on the positive things they have told you. If you do have APS, the treatment is effective. You have some of the world’s leading APS experts watching you. That is a good thing!
Kx
Thanks Kay ❤️
cpops• in reply to
You are clearly well informed and convey your point well. However some patients who have not been through this diagnostic dilemma will not have the same impression.
Your friend in all likelihood had indicators which were indisputable. In a situation where she had multiple symptoms and ended someone to pull it all together, she would have found the same issues as you have.
Stress probably did trigger Jade’s symptoms and why shouldn’t she be able to say that. However as you know many doctors will use it as a way of denying her appropriate care and treatment.
With regard to *******, he has a different strategy. He gives people with Multiple symptoms what they most desire, that is, a label or several but adds that it is mild or seronegative which denies them access to anything other than first line drugs such as NSAIDs. The result is exactly the same as if you had been told there is nothing wrong with you.
• in reply tocpops
I have no experience of this doctor you are speaking of because I live in Scotland - where, similarly to Wales, we have no choice about whom we see unless we go private. However I completely grasp what you are saying about getting totally stuck with a non diagnosis. It's happening to me ("functional overlay"/ FND secondary to Sjogrens) and I hate and profoundly disagree with this non diagnosis and the attitudes surrounding it and the intention behind it.
But however angry I feel about this situation I try not to use the names of the offending doctors here. One never knows who maybe lurking and also the posts aren't always locked to community only.
The HU member who claimed that this rheumatologist of mine was her hero doctor isn't a friend - just someone who commented on a post I read on Vasculitis UK -giving out his name.
I'm of the view that if a doctor has done me actual harm and I can prove it then I'll take it up with them and the hospital directly - as I have done once last year and received an apology from the hospital complaints and feedback for her behaviour. If a doctor has upset me greatly through their likely misdiagnosis - but not in a way that allows for a formal complaint - then I just write them a letter and/or dump them and try to move on when I can. If they dump me despite clear diagnosis then I will seek a second opinion privately as I'm presently having to do.
If I sense a national agenda is to blame for the bad attitudes of individual clinicians then I take this to my MP or MSP - as I have done.
The impasse you describe is the situation I'm currently in with 2 of my doctors whom I feel are conspiring against me somewhat. I can't move on to find a second opinion I can trust because there are no out of area referrals here in Scotland where I live. So the only option available to me currently is to spend money I don't really have and travel by car for 2 days each way to see a Sjogren's specialist in the south of England in two weeks time. I do feel very let down by the NHS but am not in a position to fight this functional overlay nonsense directly.
I suspect it is being banded about liberally here due to dire local and national NHS finances and medical arrogance. I know the name of the neurology professor I blame most for this but a few others will defend him to the ground and point out that I lack evidence to level these accusations and say that FND is a legitimate diagnosis - which I profoundly disagree with. For them he's a hero for me he's the emperor strutting along in invisible clothes.
Jade has now had the opportunity to read your experiences with this doctor and, living in England, at least has the choice to keep or dump him. Patient word of mouth about clinicians is a powerful tool so I can see why you have chosen to tell her your story here. And as she mentions him by name in her post I guess yours is an appropriate alert - especially because, as you say, we can get stuck with MUS/ functional label all too easily!
cpops• in reply to
Good luck with your care going forward.
I must add that he gave me diagnoses of SLE and Sjogren’s but they were incorrect and as it was a -ve diagnosis I was under treated.
I have by no means listed my whole story. It has far reaching consequences. I just wanted to point out that being given labels without treatment is the same as non label at al.
‘I want great care’ allows for reviews naming the doctors concerned. I have not said anything that isn’t true.
• in reply tocpops
I’m untreated now - previously diagnosed with RA I was treated quite aggressively and this worked well apart from severe drug reactions. No one has or would claim that my Sjögren’s is mild.
But as long as it is viewed as an untreatable disease it will also go misunderstood, seriously underestimated, under researched in seronegative form and very underdiagnosed. So again, I take your point. My misdiagnosis have also had far reaching consequences for me and for others. I’m passionate about raising awareness for Sjögren’s and small fibre neuropathy.
So best of luck to both of us and even more so to Jade.
I worry, yet have been afraid to say it out loud, every time I read here that privately sought after and popular doctors often seem to exchange money for a " diagnosis" . This seems Unethical to me. I like criteria though and I fall on the side of believing it can be very dangerous to treat seronegative, or in APS clot free, patients with very dangerous drugs, like steroids, immune suppression or blood thinners. But I have looked into some research done by doctors often referred to here and it all looks sound. So it is possibly just my bias about being a stickler for rules but I have the same doubts that you have about doctors who go against the current and offer actual diagnosis sans criteria evidence.
I’m with you on this a lot of my doctors have been private nhs stick more to the rules. But they are more dismissive and I just want to feel better
They need to find a way to deal with patients like myself with very worrying I think organ involvement ie brain 🧠
And get to the bottom of it not see you in 6-8months defiantly when all tests have not been done.
If someone could explain my symptoms and scans I would be happy to have no treatment at all just to know they know and will watch the last thing I want is medication I watched my mum drown in it xx
I have no doubt you are being watched, Jade! Try not to worry about that. I think you have excellent doctors who have wait to see how you develop. If seeing you every month would help, they would do that. It won’t help. Too many tests can lead to misdiagnosis so you don’t want that either. A six month call back sounds appropriate for your condition. If you disagree, just discuss it with them.
I have UCTD with low level CNS involvement. I do not see the neurologist or rheumatologist more than every four or six months. Like you, the brain MRI was repeated when it showed scattered spots. But I have not had another one for two years.
It would be helpful if you had a conversation with your doctors about your concern about your brain. You should not have to live with this level of anxiety.
Xk
Thanks Kay I’m actually okay with it all now I think I have caused myself a lot of stress worrying but I feel I have Done as of last week all that can be done for now and I’m happy to move on i just wished I would feel myself again but I guess this is the new me 🤦🏼♀️😂💆♀️
I miss my mum a lot she would have helped me but I guess that is not meant to be xx
Take what Roarah says to heart. Dr. Kaul told you take aspirin. Take it. Record any new symptoms for your doctors’ visits. But it is unlikely you are going to receive any immunosuppressants to profoundly affect your symptoms. The neurologist may offer medications for your migraines. And psychotherapy really could help with everything.
Continuing to get a new diagnosis is unlikely to help. It will only be one more opinion. And Plaquenil is probably as strong as anyone will go with you.
You have done all you can do. That is a lot.
Xk
I am older than you and after being diagnosed with meineres in my 30s, another incurable debilitating disorder but with almost no treatment, I began to accept some things are not fixable. This was again hammered into my mantra after my strokes.
Once there are infarcts that tissue will always remain dead. The only treatments to improve my state was physical therapy , speech therapy and pschological therapy even when every doctor knew what caused my infarcts( your white matter lesions are dead tissue infarcts).
Rerouting the brain is done only mentally and physically. Maybe ask for cognitive and physical therapies along with treating the trauma of your mother's passing. You may find speech pathology( not for speech only but very helpful for cognitive issues of brain fog!), physical therapy to strengthen your muscles thus reducing joint strain, and treatment for PTSD might actually begin to lessen your fatigue, pain and fog.
There are ways known to possibly prevent new infarcts, aspirin therapy or warfarin with a history of a fib or a clotting disorder, a cap machine for sleep apnea patients with lesions, and keeping other cardio vascular risks at bay. And to me the biggest one is reducing stress, where I feel therapy has helped me more than medicine.
Keep taking your doctor suggested dose of aspirin, keep regularly getting scans and blood tests because something could very well turn positive, keep regularly seeing your team of doctors but also be aware that many things are not fixable. This acknowledgment has allowed me to figure out how to best live in the face of my fatigue, pain, weakness and cognitive decline.
Xo
Thanks roarah again for all your helpful positive replies I don’t feel so alone speaking to you guys everyone just rolls there eyes at me now all my tests are negative 👎 tells me to get on with it and don’t get me wrong I do I could just cry but I don’t mostly.
I’m surrounded by in-laws not my own family (they are not helpful tbh i’ver )
I will keep taking the aspirin as my Nan also has aps and she is seronegative also xx
Your tests are not all negative. Yourblood work is negative. You have white matter lesions, they just can not find the reason. But the fact they have stabilized, i.e. No new lesions, while on ASA is a positive sign!
Now how to go about lessening your pain, brain fog, and fatigue are a bit harder to resolve. These symptoms could be caused by a multitude of non autoimmune disease too but regardless of cause studies show physical therapy, sleep improvement and cognitive stimulation( speech pathology therapy), can improve those symptoms in cancer patients, autoimmune patients, depressed patients and also in the undiagnosed healthy general public.
Ask your doctor for referrals to such treatments. I think a sleep study is somewhere all people with severe fatigue and especially unknown caused white matter lesions or early signs of valve disease should begin to look for answers.
• in reply toRoarah
Hang on Roarah - seronegative is just as valid a diagnosis as seropositive? It doesn’t mean, as you seem to think, that this is a diagnosis made outwith diagnostic criteria?
A person with seronegative Lupus usually has been diagnosed by biopsy of skin or kidneys, Sjögren’s by lip biopsy, RA by ultrasound or clear imaging evidence of erosive synovial damage.
The spondylitis family of diseases are almost always seronegative but no one would sensibly argue that PsA or AS aren’t often very destructive and debilitating diseases!
The pathogenesis may often be different to seropositive but you only have to ask about this on the NRAS HU to learn how destructive and slippery seronegative RA can be and most are on dmards or the anti TNFs or biologics as well - same with Sjögren’s - which is thought increasingly to have a uniquely MS-like presentation.
Roarah• in reply to
Reread what I posted to cops. I said without any CRITERIA plus negative bloods. I specifically also mentioned that without clots even with POSITIVE bloods I think over treatment in APS is just as risky. I think criteria of both symptom evidence and blood work is important as a rule, not a specific. I never said seronegative was not a valid diagnosis and specifically told Buckley, that her test are not all negative because her scans show evidence.
• in reply toRoarah
“It can be very dangerous to treat seronegative, or in APS, clot free...” relating to aggressive treatments. Actually seronegative status is not usually relevant where treatments are concerned. As long as it’s been clinically diagnosed by a consultant rheumatologist then it’s our symptoms and our signs (not antibodies) that should count.
That’s all I was trying to emphasise here. You maybe didn’t mean to write seronegative in this context but nevertheless it’s important to distinguish between seronegative and a guesswork diagnosis. Lots of people think the term seronegative applies to those with compelling symptoms but no formal histology for a clinical diagnosis - but it doesn’t!
Oh dear that’s not good..
I see some posts in lost of forums
Mainly lupus uctd aps that I have many symptoms ones I even brushed off like being in the sun makes me feel sick brings on a headache and makes my skin feel on fire 🔥
Blurry vision I’ve always put down to b12. Pa
All I lack is the blood tests but can see visible inflammation yet it’s not in my bloods .. I could understand if my brain scan was normal Or lymph nodes or joints but they can explain it it’s so frustrating xxx
What ever might have caused the inflammation in your brain matters less than reducing that inflammation. Ask the doctor how to treat the brain inflammation. Celebrex works at reducing brain inflammation along with many other ssri's, steroid and non steroid drugs. Your brain can not "function" through the inflammation. You need to treat that inflammation and there are meds that can help a bit faster than life style changes would.
Thanks roarah
It was a waste of my time apart from the bloods which he didn’t want to do but I asked for dr d Cruz to come in on the appointment if I was just going to be pushed from piller to post.
He then agreed to go the bloods.
I now have to wait till the end of January 31st for dr d Cruz xx
Also want to mention fibromyalgia involves brain inflammation. It is not a fake ailment, nor is depression or anxiety. They all show adnormalities in brain scans. it is a real disease. A phase two fibromyalgia study was showing great early results treating patients with a combo of a antiviral and Celebrex. If you get a somatic diagnosis it is very important to treat that ailment instead of thinking it is all in your head so ask for treatment options just as if you had a cancer or lupus. Good luck.
Dose cause inflammation I didn’t know this xx
There is a serious type of lupus brain disease but it causes major symptoms like psychosis. I think you do not need to worry about that is what I am saying. Your doctors only mentioned lesions that could be MS, right? Those are usually the white matter hyper intensities that are hard to interpret. Try to have faith that it is mild and stable.
Xk
I do thanks Kay xxx
Buckley, am I mistaken or did your scans show some brain inflammation along with high intensity white lesions? Low levels of inflammation are not always urgently treated and are seen in treatment resistant depression, PTSD, fibromyalgia, autism, dementia and many other diseases in scans now.
Yes high intensity white matter lesions of the white matter and then turned into scarring xx
Yes brain inflammation is prevalent in fibromyalgia patients. Increased glia activity is linked to fibromyalgia brain inflamation which also might cause systemic inflammation as well for fibromyalgia patients have higher stroke and heart disease risks then non Fibromyalgia cohorts. If you like I can link some studies for you.
Thank you roarah I appreciate all your help xx
Here is an easy to read article about the study linking brain inflammation seen via pet scans from mass general. massgeneral.org/News/pressr...
I don’t think they see the lesions as inflammatory. When there is in inflammation in the brain, that is considered an emergency, I think. True lupus cerebritis is very rare, my neurologist says. He only saw about five hospital admissions a year at a large city hospital and they were likely the same patients. I am just trying to clarify because these white matter intensities can be hard to interpret. In my case, they see them as likely mini strokes. They take many factors into account, I imagine.
Although there may not be active inflammation, it does not mean your idea of stess reduction is not vital, particularly with this neurological stuff. Any type of stress affects the nervous system. The article you posted really describes types of inflammation. I thought of it as “repeated trauma.” My cardiac stress test was a great example of what stress can do. I felt like I had been put in a washing machine and my head is still trying to calm down. Your article was timely.
So, just clarifying “active inflammation” from a whole host of other stuff that they don’t understand. Glad my doctors admit they don’t and are willing to experiment with me. 😅
😘k
Thanks Kay
Yes it was active in the beginning this is why I was diagnosed with ms because it looked demolition of the brain
Now it’s old no change he still couldn’t explain it no one can
Unless it is ms ..
but neuro and dr d Cruz think uctd and they are both very good xx
I had the cardiac stress test. It was awful. I can’t tell you how bad I felt.
They let me lie in a bed instead of sitting on a chair afterwards.
After a sleep for 45 minutes I felt a lot better,was able to eat my sandwich,have a drink prior to the scan.
Compared to the stress test,the scans ( 2 of them through the week) were a breeze)
Just kept saying to myself LIE STILL, then I thought about going to see horrible histories film and thought about the TV PROGRAMME of it which I watch with my grandkids. Am still waiting for results,I don’t think I will have the stress test again.
Hi Jade
I’ve just got in from my trip and quickly read through your post.
How much blood did you have taken ?
If anything shows they will call you back sooner then January xx
Thanks Lisa how was it?
12 bottles 😂 xx
If I fell to sleep Tonight and never woke up I would fall asleep very contented.
I’m extremely tired and all sorts still falling apart 🙁. I think I try to be normal but unfortunately that’s not my reality.
That’s good they did the fall blood panel. I had mine taken on I think 21st December and called back on 4th January x
That’s good il wait see what they say xxx
Can you ask for more steroids I’m sure you will get this under control Lisa you will feel yourself again xxx
🙏🙏🙏🙏🙏🙏🙏
Hope you wrote everything down! Hope it went well( or as well as can be expected
I know the feeling,I’m quite lucky I think,I go to Wythenshawe Hospital in Manchester.
When I go for consultations,I see the same rheumatologist and ILD LUNG CONSULTANT. At least they sing from the same sheet.
Although I think I have had lupus for years,have only been diagnosed this year. On Azatropine currentlyretitrating, due to rise in liver enzymes 3 weeks ago.
Am finding it hard,but have to trust them,on the positive side they have been honest( the first time I went I was told I would not get better,but they may be able to control my symptoms.
I really appreciate their honesty. I don’t want platitudes. Hope you manage some sleep tonight
Sorry to hear that really I am but glad they are helping you I hope so too
Xx
Forgot to say, I see the ILD Dr and the Rheumatologist in the same appointment.i thinkit works really well.i think it’s better for me as I they don’t have to write to each other about things.
Good luck Buckley, thinking of you! 🍀💐🙂
best of luck Buckely, i hope it went well and you got some clarity. stay strong to your beliefs! x
Thank you zzz
Hi. Well done for sticking up for yourself with Dr S! Proud of you. I completely understand how you feel when Drs can't agree between themselves about Dx. Just how do they expect us to feel when they do this and we have to rely on them - thank goodness for the people in this wonderful forum!! Stay strong! xxx
I know his face he wasn’t sure what to say next
I’m sure he was looking to discharge me .. I had to push for bloods because he could find no evidence to back up doc d Cruz ..
I did pint out that there was a pet scan and a brain scan which backed up doctor d Cruz but he literally went through his letter circled all the findings from doctor d Cruz draws his own line and wrote stress -ptsd-
Brain lesions he put a ?
Lymph nodes he wrote infection/virus
I said to him that’s a lot of if buts and maybes with no bloods being checked 🤦🏼♀️🤦🏼♀️🤦🏼♀️ it was more a argument then a appointment .
I’m dreading the letter xx
This is so unreasonable of Dr S! Am I correct in thinking that Drs S and d'Cruz work together? If so, they surely should discuss cases such as yours and come to some common ground - BEFORE putting you through this. Very unprofessional. If they do work closely together, perhaps it would be wise to contact Dr d'Cruz's secretary to voice your concern about Dr S's reversal of the earlier Dx, ie before the review letter is sent. Stay strong. xxx
I agree that the handling of this was very poor. I don’t know exactly how it should be dealt with in the UK. In the US, if someone were covering a doctor’s patient, I don’t think they would weigh in on a diagnosis unless it affected something immediate. If Dr. S has been assigned to Lisa, that may be different than if he was just filling in. If he is now responsible for her care, he has to agree with the diagnosis. Could he have said that he wants to confer with Dr d Cruz? I am perplexed but it was not handled well. It would be hard on any patient.
Kx
Strange isn’t it
No he said he will write a letter explaining that he could find nothing no evidence to what doctor d Cruz had said. Xx
Yes they do 🤦🏼♀️ seems to me dr d Cruz has a name for himself and dr s wants to un pick it and wants one for himself
Two very different doctors cxx
But you - and probably others - are in the middle of this very unprofessional squabble. It's just not on. Perhaps Dr d'Cruz will stick to his guns and over ride Dr S?? Again, this will put you in a very unsettling situation. Perhaps you could contact PALS and see what they have to say. Stay strong! xxx
Thanks hopefully ay xxx
No Dr ***** is known for this way of treating patients. Put a thread on here asking if anyone has had a bad experience with him and you will hopefully get some feedback.
Thanks Louise it’s just annoying isn’t it when one doctor tries to unpick it all and say nothing wrong with you.
😂🤦🏼♀️ xx
Just seen this, been off site for a few. Prayers that it all works out
Thanks sweetnlow how are you? X
Goodmorning! I'm doing ok thanks. Had a brain and neck MRI last week. I'm baffled to say the least!! In 2017 I had a brain MRI and it showed chronic mastoiditis, chronic sinusitis, as the biggies and my deviated septum which I've had for years and always will. The current MRI shows nothing. Went to totally different place with a different radiology reading it. I had him compare with 2017 an he came up with nothing different! I'm amazed. Still have pain in left side of head from trigeminal neuralgia. Nothing like it was thank God. Wishing a good day for all of us.
Well don’t knock it although in my experience I would get a second opinion just to be safe xx
Oh not knocking it, that is my second opinion from different doc an second reading on brain scan from last week with the comparison from 2017.
That’s fantastic then so pleased for you cx
Thank you
Hi,
Sorry I haven't much to offer. Sorry though, it must be very difficult to have so many different opinions from doctors. Also I know it can feel sometimes like they're saying "there's nothing actually wrong, you're just stressed."
I'm beginning to understand now, that these things can lead to genuine symptoms, so you're not necessarily being brushed aside. However, it doesn't really help.
I must admit I like to think if I'm ever diagnosed with lupus it will be seen as a fact, not a maybe. Sounds unlikely though and v unsettling.
I'm diagnosed with m.e so am probably put in a box now. Then when I saw a rheumy 5 years ago "stress and could do with counselling" I can't see what I could have said to make him think that, apart from no obvious physical findings. Would have preferred him to say he couldn't find anything wrong, than that. Fair enough if I'd said I was depressed or anxious.
Have a 2nd opinion coming up. Since my last appointment a positive ANA and Raynaud's, also photos of rash, so we'll see.
Hope you're given the treatment you need and deserve x
I agree with you. It seems more appropriate to assure someone that the tests indicate they are fine. Can a doctor at consultation really tell that stress is causing particular symptoms? And now you have more symptoms with positive tests.
Good luck with all this.
K
Yes you would think 💭 it would be a definitely with all the symptoms and brain lesions and joint issues actually worn joints and bone marrow changes
Muscle weakness and neck lymph inflammation ect ect ect but no they don’t seem to be all that interested the main interest is to get me off their books.
I guess my blood isn’t playing ball at all tbh not even a positive ana xx
My neurologist mentioned to me that in 2013 it was already known that over half of fibromyalgia patients had skin biopsies showing small fiber neuropathy. It is why pots and Fibromyalgia often go hand in hand. Last year another study was completed showing this same connection between fibromyalgia and SFN. Ask your doctor about small fiber neuropathy and your autonomic nervous function. Fibromyalgia may be caused by SFM and glial activity both of which have treatment options to improve both the pain and the brain fog. ncbi.nlm.nih.gov/pubmed/302...
Thanks roarah
I think my daughter who is 11 has pots she’s under investigation atm
I feel ill today because I went out last night had two drinks but came home at midnight I’m paying for it today which at 29 I shouldn’t be cx
I have always felt poorly with late nights more so than the drinks. Hope your daughter receives good help. I started with symptoms when I was her age too. My blood pressure is always shockingly low. At the time I was just trained how to get up out of bed or desk chairs to prevent fainting. In retrospect I think my pfo had more to due with my pots than my BP did but I still get the black out vision when I stand too quickly. Luckily my 12 year old daughter does not seem to suffer from this but she has idiopathic LR and cyclic vomiting migraines 
Feel better soon! Xo
I also have low blood pressure but nothing serious if just naturally low.
My daughter can’t stand still for longer then 5 mins without her feet and legs turning purple red blotches like the blood is pooling xx
Poor thing! I hope they can figure out a solution. Xo
Thanks xx
Aw bless her ❤️ it’s one thing when it’s us but it’s another when it’s our babies x
Yes I can have a few glasses of wine at home and feel fine I think it’s getting over tired and the cold sitting in the pub Garden ect xx
Yes, we always worry about our babies, however old they are (mine's in her 30's!). But, take care of you too. xxxx
Thanks megs53 how are you today xxx
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