Email sent may have hung myself but I don’t care - LUPUS UK

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Email sent may have hung myself but I don’t care

Sent this today thanks all for your help I received dr a letter today and put the two together it’s awful.

No where near the same one I paid for one on the nhs two different doctors working under the same team..

Thanks for all your replies xx

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That's just utterly bizarre. How can they come up with such different diagnosis? It honestly sounds like a lack of communication on their part. And why have they ignored your brain scans?

I had something similar where a consultant totally ignored the presence of o bands in my CNS fluid after a lumbar puncture. Said it was normal. I argued it wasn't. All the docs seem to have overlooked it. until one actually said 'that's interesting - shows an infection somewhere cross the blood-brain barrier - could be Lyme disease, could be lupus'. I'm still chasing a definitive diagnosis. x

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Sorry you have this too.

I feel doctors these days are too concerned with out doing each other and climbing to the top to even think about the patient.

I was first diagnosed with ms

Every test apart from my brain scan and pet scan which shows inflammation in lymph nodes and Oesophagus have been negative I understand this makes it more difficult

But if you meet the criteria for seronegative then you do and doctors should agree and if you don’t then you don’t they should also agree

Unfortunately they cause stress and anxiety and then blame it on stress and anxiety.

It’s a awful place to be in xx

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Hi Buckley123,

I'm really sorry that you are in this position and I hope that they are able to arrange another appointment with your initial consultant on the NHS to help clarify your diagnosis and treatment plan.

I need to make you aware that I have edited your post to remove the image of the letter for the moment. I've done this for two reasons;

1. It contained your full name and given the sensitive nature of information on this public website you may wish not to disclose this.

2. It is against the terms of use for this website to name other individuals in a negative light. The reason for this is that it could potentially leave us vulnerable to a libel case and we need to protect ourselves against this.

I hope that you understand. Please feel free to re-add it if you want to redact some more parts.

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Sorry Paul I didn’t think 💭

Thanks again

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I thought I was crazy. (I am) I couldn’t find what was being talked about. Glad I’m not having a fuzzy head day!

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😂😂🥴

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I’m so sorry that I’ve only just caught up on the dreadful problems you are facing. I can’t add anything to the useful help others have offered, but I’m sending a cyber hug to you x

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I’m with LK: ❤️🍀❤️🍀❤️🍀❤️🍀

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Honestly don’t know where to turn next x

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I think you did the right thing to go directly to the rheumatologist who diagnosed your UCTD. It is for him to provide the explanation and way forward for you.

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Thanks kayhimm il wait for the gods to answer 😂🤦🏼‍♀️🤔😇

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Thanks 🙏 maybe I’m barking up the wrong tree I don’t know anymore all my bloods are 💯 so I I know it’s difficult

At what point do they agree seronegative or say no it’s something else xx

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The two differing doctors need to talk about your case. It is too complex for you to know how to move forward. I have two cardiologists, one is a structural cardiologist specialist the other is my regular cardio. A few months ago they differed on treatment options to be used inadidition to my warfarin. I asked them to work it out and tell me which way to precede. They consulted with each other, my hemotologist and made a decision together and I followed their treatment plan. Ask the two on the same team to consult together about their differing diagnosis.

Good luck.

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Thanks I have done this although I do feel rather abruptly.. I was upset at the time of the email.

Now wishing I never worded it the way I did however I do stand by what I said just could have said it better I find myself loosing my head a little xx

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Abrupt will get their attention and allow them to realize just how horribly this contradictory care is affecting your well being. You have the right to be frustrated with the care you are receiving and they should appreciate your candor. When they decide which way to proceed make sure your are offered treatments to lessen your suffering.

Even if it is not uctd, there are treatments available to help you live life with less suffering. Lyrica is proven to reduce inflamation in brain tumor patients, and it might be why it works so well for many with fibromyalgia, epilepsy and brain fog. When the doctors decide how to move forward make sure they have ideas planned to help you regardless of how your illness is named.

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I don’t know any details but you sound desperate - call Lupus UK for advice. Is it possible to get an appointment at Guys Hospital ? They solved a similar problem for a friend. Please don’t despair- seek help

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Thanks Cas this is at guys I feel I’m literally hitting my head against a brick wall xx

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Hi Jade. I do hope that this leads to a useful discussion about a way forward. Sure, both consultants are entitled to their opinion - but for the 2 dx's to be so very different (and the Drs. work together in the same dept) means you need some clarification, at the very least. Gentle hugs. xxx

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I hope so megs53 I have to say my bloods are 💯 normal so I understand it’s difficult but if my scans are there then I don’t understand why some are diagnosed with seronegative and some are not

Not really sure what they are looking for xx

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You might want to read a little about UCTD so that you can ask Dr d Cruz questions. Usually people with UCTD have symptoms of one or two connective tissue diseases, a positive ANA or some evidence of autoimmunity. But they do not have all the symptoms to be diagnosed with lupus, rheumatoid arthritis, or Scleroderma. Dr d Cruz has a position based on your symptoms and maybe MRI. You are a very difficult case because, as is clear by the differing opinions about your MRI, it doesn’t point specifically to one disease. Many people with UCTD are described as “lupus-like” or “scleroderma-like.” It might be helpful if you understand what Dr d Cruz sees with you — how he is putting your symptoms together.

Go to HSS, undifferentiated connective tissue disease. This is a pamphlet for patients with a good description of the disease. It will help you to see why doctors would have disagreement about your diagnosis.

No question you are owed a thorough explanation.

Xk

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I see what you are saying I just can’t see how they can have barked up the wrong tree for so long.

Yet no one is doing anything more plan wise ?

All my bloods are negative apart from ace and someone mentioned a progressive neurological disorder with high ace levels which has frightened me a lot what if this is it and the doctors can’t find uctd because they are wrong ? Xx

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I know you are having a hard time with all of this. The doctor did not handle his differing opinion well at all. But I do not think it is helping you not to try to understand why the diagnostic process can be difficult, particularly with neurological diseases and autoimmune diseases. They are frequently diagnosed through multiple tests and on clinical judgement. If you have infection, they can usually tell through a blood test. It is simpler.

I do not hear that anyone has « barked up the wrong tree. » They have all had ideas about what is wrong. Had you had blood tests that were consistent with lupus, they may have thought your MRI was consistent with that illness. But thus far your blood tests are not helping the doctors.

The dilemma you are in is not uncommon. My heart goes out to you because it is a terrible dilemma. It is very difficult to know the difference between MS, neuro lupus and APS. Really difficult!

Medicine is not that sophisticated when it comes to diagnoses in this area. I hope Dr d Cruz explains to you why he sees things differently. Remember doctors disagree all the time, particularly when there is grey area.

The plan may be to monitor your MRI. You can ask the neurologist and Dr d Cruz if there are additional medications to address your symptoms.

Hoping you get clarification soon.

Xk

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Hello Buckley,

I agree with KayHimm. We all have a notion that medicine is a 100% guaranteed science but Doctors opinions differ greatly. One GP told me philosophically "Ten different Doctors - Ten different opinions" I've been navigating the medical system for 41 years and there's a truth to this. Its just their way of trying to find an answer.

I know you're desperate to know what's going on and I remember reading the post where someone responded and decided to make a nasty potentially terminal diagnosis on you're behalf. I had a google of what they thought you had and it didn't make any logical sense to me what so ever - given what you'd said about you're pathology and symptoms online.

People here may seem knowledgeable about diseases -but they're not Doctors - and even if they were - they don't have you or you're medical history sitting in front of them. Please ignore what that person said you had. Whoever it was - they may have thought they were being helpful, but I think its probable they didn't really think through very much about what they posted. You don't always know what motivates peoples responses here - even at this wonderful forum.

My advice is to trust that you're Doctors will be empathetic enough to understand you're frustration and fear with the email. I think they will be. Good one's don't take things personally.

From my experience with delayed and complicated diagnosis - if you've been fighting for an answer a long time - but you're feeling relatively well and there's a temporary dead end - take a break from thinking about it all. Re - charge you're batteries and if you can - do something you most enjoy for a while - and get back to the medical stuff when you're feeling better.

*****Touch base with you're GP to figure out what you're next step is*****

For me its become a bit of a skill to sit back and live with a lot of uncertainty while waiting for a diagnosis. (Right now its - a mystery anaemia for me. Just slowly waiting for an answer). My GP thinks its one thing - and two specialists - again differing opinions. Its just a slow process of eliminating all possibilities until an answer is found. They disagree - until something pops up - either in tests - or in their contrary conversations & letters - until something leads them in the right direction.

Don't loose faith that this will happen.

xox

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Such wise advice. I would be shocked if the doctors involved do not have empathy for what is involved here. The difference between PTSD and UCTD is not small. And yes, going to her GP, who could intervene and be an advocate, is excellent advice.

Xk

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Thanks zxz

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Taking a break from it is actually a really good call.

I used to hit brick walls , fall flat on my face. Regain my strength and then continue my battle.

It is not an easy thing to. Do but is really important for our mental health.

Xx

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Thanks mate xxx

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Hi freckle1000

Thanks i know what your referring too ❤️ literally not been able to sleep since 😂🤦🏼‍♀️ you see ending up like my mum is my biggest fear being trapped.

Ever since a child I worried about being mental as my mum used to call me it ( she wasn’t very well herself )

All of this has literally been the hardest time of my life.

Normally I can cope and have coped with everything and anything as if it was nothing but I just can’t seem to shake the feeling.

I did get a reply from Cruz and he’s going to get All my files and sit and go though it all again and if a appointment comes available before end of January then He will see me before then.

Logically I know if I was really ill my brain scan would deteriorate and the doctors would be moving quickly I’ve just seen the worst and it’s hard to separate xx

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So it sounds like Dr d’ Cruz is really coming through for you! He is doing exact what he should do. Good for you for asking for an explanation!

Xk

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Thanks kaykimm xxxx

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Yes - it must be very scary if you fear going down the same path as you're mum. Just remember, you're not her - and whatever's happening - the chances are her particular problems aren't going to be the same as yours.

Also - better medical and neuropsychiatric knowledge now days. Far better odds of getting help and treatment.

I have an elderly Dad with Parkinsons and fear with some symptoms I have - that I might end up the same - it's an easy - think trap to for me to fall into - given how emotionally interconnected we are with parents - and this sort of mind warp stuff can be compounded if the relationship was complicated or traumatic. ) I have to keep reminding myself - the chances of me having it is low - and my problems are SLE and my own individual set of 'being mental' .

xox

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I can understand that sorry about your dad my Nan has this also.

If I had a answer I would then stop looking I’m normally quite positive and productive I believe in self help ect but with no plan and other more damming possibilities it’s hard to move on.

All my bloods are so negative I just don’t get it xx

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Believe me I understand. When you're unwell and there's no answer (yet ! ) - its normal to think the worst. I've done this absolutely every time I've flared.

But there are always just as many harmless explanations for symptoms as horrible ones.

Not so long ago - I thought I might have had dementia - (or sero negative neuropsychiatric lupus - even though I've never been sero negative in my life)

In the end - it turned out that what I thought was a relatively harmless concussion many years ago that I hadn't thought about much - was actually a mild acquired brain injury - added with too many traumas happening one after the other - hence I was a mess.

When you come here - everybody has gothic and complex explanations for symptoms, partly because a lot of us have lost faith in Doctors and with good intentions - try and fill in the gaps. This process doesn't always help when you're sick, bewildered and traumatised by being sick and have got internet leading you to think you must have a few select illness possibilities. Medicine is far more complex and tricky than an internet search engine - (trust me I've been fooled myself more than once)

I wish I had an answer for you, but while Doctors are trying to figure it out - remember to look after yourself psychologically as best you can.

xox

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Great news! I'm so pleased Prof d'Cruz has given you a positive reply, and so quickly. Upward and onward. xxxx

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Thanks how are you xxx

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Hi Jade. I'm not too good just now, thanks for asking. I've got an MRI of my back/thorax this week-end and a review at the end of the following week as several worrying symptoms have appeared recently. I'm lucky they're acting quickly on this one. I'll keep you posted. xxx

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Definitely do I hope all goes well for you meg xxx

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thanks! xxx

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This sounds like a really positive reply from you Jade.

Your very right they would be moving quickly. You must remain focused that nothing too gastly is going on with you

Xx

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Thanks mate how you today xxx

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I’m ok, woke up feeling really fresh today. I decided just to relax and make sure I don’t go on one of my manic cleans while I feel well enough to do it.

And then I ended up with a poxy headache all day 😅

Can’t win . But I’m still smiling 😁x

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I feel you

I’m getting used to these poxy headaches mine are more sensory then pain xx

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I don’t know what this is, maybe sunshine, as it hurts my eyes when it’s bright outside.

But I can cope with a headache x

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Same I have light sensitivity with my eyes. X

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Maybe this could be what causes my sleep problem, being light sensitive and I’m also sensitive to sounds (sometimes).

God only knows but it’s pretty complex stuff

Xx

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Hi Jade,

Like all who have responded I am really sorry to hear of your situation. It's one that I have & still am experiencing after 9 years.

Have you considered making a complaint to the Care Quality Commission (CQC)?They are the government regulators of healthcare.

Whilst it will not be possible to say which medical professionals are correct & hence what diagnosis you have, you can say that you are in pain & debilitated by your symptoms, that HCQ has greatly helped you and that this is under threat of withdrawal. It should not be necessary to have a diagnosis to receive treatment. HCQ is a low risk drug & the benefits clearly outweigh the risks.

It would be worth copying in the Director of Nursing at the hospital you are complaining about as they have legal responsibility for care, and explain you are copying them in as a courtesy. CQC like the issue raised with the hospital in the first instance & will probably just ask for a response from them initially.

I have had a successful outcome via CQC which resulted in the removal of a local rheumatologist & 3 new rheumatologists being employed at my local hospital when I discover the first Rheumatologists had no experience of CTD, made multiple basic errors, was ruling out CTD after just 1 consultation, and was not treating basic symptoms. I found evidence of others being affected too.... But that's a who other story which one day I will tell.

Sarah x

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Hi Sarah thanks for your reply

Yes I do no about the CQC

I have had lots of dealings with them regarding my mum when she was alive I found them useful.

Il wait to hear from the doctors see what they can say I do believe dr d Cruz knows his stuff

I’m a little concerned if it’s not autoimmune someone mentioned a progressive neurological disorder which also fits me.

All my bloods are negative apart from ace which fits this other neurological disorder 👎😕

Can I ask did you have problems with your bloods being negative ? Xx

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...sorry should have added that all the blood tests are boarder line or weakly positive, as was nailfold capilloscopy undertaken for scleroderma.

Sarah x

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High ACE is also sometimes idiopathic, seen in PCOS, diabetes, and other non serious disorders so try not to put to much focus on it. And your recent scans did not show progression :). Just focus on sorting these two differing diagnosis and hopefully the doctors can also sort out treatment options or suggestions for how to move forward from there. You may end up on a survalance schedule for a little while.

My ANA and APLAs go in and out of positivity with in months at times. My ANA was positive in October but then negative in March. beta 2 was negative in October, then 150 in Dec and down to 35 in March so you should be retested in a year or sooner if your symptoms worsen or new ones progress.

You have had many doctors look over you and they all seem to feel at this moment you are not at terrible risk, albeit in pain and not well, but safe from imminent health danger. You should try to just sort the confusion on if HCQ should be continued or not. I think HCQ is known to lower antibodies, so coming off it and being retested in three to six months might give you positive titers. Or if it is decided you should stay on it you may find your health starts to improve as more time goes by without antibodies.

You got this! Xo

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Your such a ⭐️❤️

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Hi,

I have been ANA positive on 2 occasions, elevated IgG, decreased creatinine, and low levels anti-dsDNA.

I present with a 9 year history of progressive autoimmune conditions and a family history of the same causing pulmonary fibrosis, weight loss & death.

I have overlapping features of SLE, polymyositis, & scleroderma, and have recently been diagnosed with Raynaud's affecting the lungs, with some evidence of similar affecting heart & kidneys. But it has taken 4 private consultation before I found a Dr who recognised this symptom. The treatment has been literally life changing for me.

Sarah x

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Your situation may have been different from Jade’s. Jade has been evaluated by highly respected doctors at a center that sees the most complicated cases. I disagree that anything other than poor communication has been done in this case. Anyone reading Jade’s medical record would be able to see that all the appropriate tests have been done, and that doctors have tried to come up with diagnoses. Those diagnoses seemed more “possible” than “firm.”

We cannot expect doctors to agree on a diagnosis. That is why we go for a second opinion. I think it is up to Jade’s initial rheumatologist, who made the UCTD diagnosis, to resolve this with his colleague and with his patient.

I really don’t patients would benefit from removal of a rheumatologist who is cited repeatedly in important research studies and continues to train future rheumatologists.

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