So few weeks ago I went to hospital because my neck was really weak and my eye was playing up to be told by my local hospital they where admitting me because I didn’t pass neuro my eye was rapd and my neck was weak They wanted me to stay in and see a neurologist about ms
So I discharged myself went back to my neurologist privet the ms specialist in charring cross
I’m going to attach his letter but basically he said I had neuro sarcoidosis and started me on high steroids 60mg to taper down 10mg a week and to see him again in clinic to start mex! This is the same doctor who I don’t really like and said there was no thing wrong with me in the first place well he said lupus and then negative tests he left me to it ! Laughed me out the door so I had to find myself another neuro
Which is who I have been seeing via the nhs he just wasn’t available to see quickly !
Anyway my neuro that I see the one who Said I had uctd and then dr Cruz said I didn’t
He was the one to start me on hydro and he upped it to 400mg
Which he said now caused my eye issues
Anyway he is London’s leading neuro sarcoidosis specialist
So I went back to him to tell him what the ms specialist said .. he stated to me that I do not have neuro sarcoidosis and mex I didn’t need
But had said he will do another brain scan pet scan a ect but I have to come off the steroids To be able to see it!
I just don’t know who to believe he is certain I have uctd and even when I said doctor Cruz said no he just said no dr Cruz is a busy man an I’m giving you the treatment he would give you. He discharged you back to my care I trust him with my patients and he trusts me with his !
Mex will ruin your liver !
At I time you may need it but for now you have uctd and we will call it Jade’s syndrome! My ace levels are still climbing at 93 I think they should be around 48 !
Steroids I feel better but not fantastic like I was hoping my headaches are back and Hydro has been cut to one a day !!
What would you guys do !?
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Buckley123
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Oh, Jade, this is as tough as gets for a patient and a doctor. I think there is more agreement here than it appears. They all think you have some sort of neuro inflammatory disease. There just are no easy answers. My family is going through a similar situation with my cousin’s daughter, who also has the optic neuritis.
My vote would be to stick with Dr. Kidd. Professor d’ Cruz did expect him to continue to care for you. Your issues clearly fall within his expertise. I know it is hard, but try to have confidence that time, more testing and medical expertise will work in your favor.
Thanks kayhimm!! Wise words as always ! I do trust him more so then the other neuro who is willing to treat !
Which I never thought I’d say because I’m desperate to feel better an a search for a diagnosis but that’s it isn’t it I want my diagnosis not any! Just because !!
Jade, I have learned you really cannot force these neurological diagnoses. They won’t tell my cousin anything. They are waiting until they know for sure. And she is on her second round of IV steroids for her vision. Also with her, the neurologist will not do a lumbar puncture until she is off the steroids. Best to trust their judgment.
Hang in there. Your doctors know this is very hard and that you are coping amazingly well under the circumstances.
I think she knows they are considering MS. But the family doesn’t ask a lot of questions. Want to know they are treating her optic neuritis and doing everything that needs to be done. Lupus tests were all negative. Mother has lupus, so autoimmune disease has been suspected.
Yes, I am learning more and more. I think with her it is likely NMO or MS. I never had heard of NMO but my rheumatologist has helped out to make she is getting good care. She lives in a smaller town. She is in her mid-thirties.
The negative bloods phenomenon depends on the illness. MS is diagnosed mainly in the symptoms and MRI (her MRI has many spots) and other tests like LP. I don’t know about sarcoidosis. They wouldn’t give a lupus diagnosis out without a positive ANA unless the evidence is overwhelmingly. I can’t imagine an MRI alone would be sufficient because it is not specific. That is maybe why Dr. Kidd thinks UCTD fits you best. I like his way of describing it as your unique illness. 😅 In the end they have to see us as individuals.
You really do not want a diagnosis given out too soon.
Yes my brain scan is the same non specific lots of lesions 😌
I was tested for devics disease via a blood test antibodies negative !
And mog antibodies should be checked mine where negative !
Lumber puncture negative also !
Even with sarcoidosis should show on lumber puncture but it didn’t ! But my ace in the blood are high!
Maybe ask about sarcoidosis! As if she had to have one it’s the one that can burn itself out or hit remission for a long time !! Maybe if she hasn’t already ace levels to be checked !! Xx
Hi Buckley, sorry to hear about your ongoing health issues. If it isn't sarcoidosis, can the specialist account for the ACE levels? That is what I would be asking. "Why is my ACE level so high?" "Can you explain to me why it is x diagnosis and you don't think it is y diagnosis?" Ultimately you are the one who has to live with the consequences of a misdiagnosis and overmedication or undermedication, so you should feel that you have a reasonable explanation. It is always possible for an unpleasant doctor to be right and a lovely one to be wrong, so try and objectively look at the facts they put before you rather than their bedside manner. I don't know if that is at all helpful to you, but that is the approach I would take. Lulu. Xx
I have asked and he explained that my brain scan did not match neuro sarcoidosis and ace are inflammation marker normally from chest but my last pet scan last year was completely clear !
It can be seen in other diseases but my bloods don’t match! He said my body flares inflammation but the cause is not really known I don’t fit one thing that’s why he thinks uctd
The other neuro said it would be wise to treat as neuro sarcoidosis as my ace levels are high and my eye runs along with sarcoidosis and if I respond to steroids they know they are on the right track! Which they have but slightly.
Totally agree with Lulu about the questions to ask. They seem to have made their case. It was interesting to hear the explanations. So hard when you have to decide.
Yes this is why I haven’t been on just sitting back and taking stock and thinking !
That and the steroids have me in a wired tremor state 🤦🏼♀️😂
I’m having more scans with my sarcoidosis specialist so if it’s now in my chest he will have to retract what he told me I’m waiting for his letter See if it reads the same as he told me in clinic
He is the best for sarcoidosis so if it was surely he would be the man in the no ?
And the ms neuro was wrong to start with so I’ve already lost his trust he said lupus .. then just migraines enjoy your summer !! Left me in a situation of paying for help !!
Scans are the way forward because until they have scanned they could be wrong and I don’t want to take meds I don’t have too so I just have to hold on till May for a pet scan !! Xx
I have to say that the letter you’ve attached reads very clearly and seems to make sense.
I have had loads of clinical letters from neurologists over the past few years and this one seems pretty definite. Mine always make me sound like I’m a total “heart sink” patient!
So if it wasn’t for him changing his mind and tune I’d be tempted to stay with this chap if he will see you on the NHS - because UCTD doesn’t seem to quite tarry with high ACE?
As for eye symptoms - this neurologist is saying this is neurological but have you seen an optician or ophthalmologist to check that it was Hydroxy? I ask because I was told when on Hydroxy that the retinal problems it can cause are very specific. If yours corresponded with the specific Hydroxy damage then this neurologist is clearly not on the right track.
So I really don’t know what to advise. But I do really know first hand how hard it is when specialists contradict each other and change their minds on a diagnosis. It’s so hard for us on the receiving end as we are left picking up the pieces of the uncertainty this leaves us with. If you trust the other guy, Dr Kidd more, then I’d follow your instincts.
When in a similar situation myself last month I decided on going with the rheumy who would take their lead from Dr P, the Sjögren’s rheumy, even though I’m fairly sure I do also have some form of systemic sclerosis and should really still be attending the scleroderma clinic.
But once trust has broken down badly there’s no way back. Xx
Dr Kidd is supposed to be the best for sarcoidosis but your right ace levels and uctd don’t seem to come together ! And dr Cruz said it wasn’t in the end
🙇♀️🤷♂️
So dr Kidd is a neuro ophthalmologist as well and has his own clinic on a Friday at the royal free as well as being neuro sarc specialist
but wasn’t Keen to recheck my eyes ! Just said it would be because of hydro.
I’m sorry your having similar issues it just makes everything more scary stressful and unbearable to deal with !! Xxx
I think he should have checked himself to be honest. Has it cleared up since you stopped Hydroxy? Do you see Dr Kidd and the Cruz chaps privately or NHS? If the latter then that makes decision harder but if private then I think I’d trust the one who’s letter you’ve attached. Or maybe you need to speak to all of them by phone and explain that differences of opinion are v unhelpful so could they please run further tests to diagnose finally? Xx
After I stopped hydro because one of his team said until I see him to stop (which I think was sensible )
Then I see dr Kidd in clinic and he said he thought it was because I had been upped from 200mg to 400mg two weeks before ! And to go back to 200mg so I’m currently taking it one a day with the steroids and tapping down from 60 mg I’m on 40mg this week!
My eye is still blurry and my headaches have come back ! Not to mention tremors are bad but I think that the steroids !
I see dr Kidd via the nhs at the royal free
And I can see dr Omar Malik at the charring cross he’s put in for a to see him urgently in clinic after my steroids.
But they have massive differences of opinions!
Dr Kidd is neuro sarcoidosis and dr Malik is ms specialist
Dr Cruz said they are both amazing neuros 🤦🏼♀️ but one is wrong
Okay I do see exactly your situation. I really can’t advise - is there a UK Sarcoidosis charity with a helpline you can contact perhaps or MS Society helpline?
Sometimes talking things through with someone who has first have experience of the disease is helpful. This is how I decided what to do - I phoned the BSSA helpline and talked it through with a long-standing Sjögren’s sufferer. Then when I met my new rheumatologist last month I levelled with her and said that I’d had the professor and her Scleroderma colleague completely contradict each other in the same CTD clinic. I told her that these contradictory opinions were messing with my wellbeing and, although both are her colleagues, she seemed to understand.
My new rheumy seemed to get how anxious this was making me and said I need rheumatology input so she would take me in the parallel rheumy clinic as the vascular med professor is semi retired and this only leaves me with the fob off vascular dr and my other rheumy - who passes me to him all the time.
So it was an easy choice as I went with this nice younger rheumy who sees most of the Lupus and Sjögren’s patients here and she seemed willing to take me. She ran very many blood tests - only things that showed are w very unusual antibody for scleroderma and my +ANA.
I see her again in 3 weeks to discuss which overlap CTD, if any, and going back on Mycophenolate after 2 years off it. I feel much better placed than I was but also quite apprehensive that she may not feel able to diagnose scleroderma without the more common antibodies most present with. I only have weird one off antibodies show up for limited and diffuse types.
I don’t really know who to believe or trust anymore either but maybe the second appointment with her in 3 weeks will allow me to make more of a trust commitment. If she says all “just” Sjögren’s then I don’t think I will ever trust her though. And I’m mixed about restarting Mycophenolate until the potential spread Corona Virus is more understood and we have a vaccine.
If I were you I’d factor this in too and see which doctor in which hospital is most likely to be able to see you at very short notice.
As you feel you may have MS and your blurry vision has continued then you may want to find yourself a good NHS rheumy who will decide if your neuro symptoms are due to a CTD or are all neurological ie MS.
There are biopsies that are done for Seronegative Sjögren’s I know and Sarcoidosis probably too. I don’t feel dr D’Cruz has served you very well tbh and I think I’d try and find a rheumy who can be objective and take you on NHS if they decide that you have a rheumatic disease which can present very much like MS.
I know Dr Price in Swindon charges less than others for one off private consultations and is brilliant at thinking outside of the box, used to eye diseases etc so you may want to go to Swindon and take your notes from both neurologists and say you need to know which to trust. This is what I did and it was money very well spent. She is president of the British Society of Rheumatology so very well thought of and knows a lot about eyes too. If you see her for an objective second opinion on UCTD v Sarcoidosis or MS she might hopefully make your choice much easier? One doctor overseeing everything is best as you know. X
Ps the deciding factor for me was which doctors would be led by Dr Liz Price’s opinion and related letter. My dermatology Professor and my new rheum have both said they would be led by her.
Whereas my old rheumy, neurologist and the vascular dr twit all completely ignored her first letter and treatment advice so for me they had to go! We can’t have doctors who are simply led by their own egos. At least your Charing Cross chap has not been too proud to change his mind? X
Although he has changed his mind because I came back to him privately he is mention sarcoidosis but all the tests at my he time where negative
Dr cruz I don’t think did much for me ! Wasn’t interested at all !! Was fine to take my money but offered me no actual help and went back on his findings in the nhs clinic and discharged me .
Well I know that often enough a doctor who one person rates very highly as their life saver proves to be another’s doctor from hell. This is probably why it’s best not to name doctors here who we have personally fared badly with. I’ve got plenty of these on my list too lol 🤐
But I think it’s okay to sing Dr Liz Price’s praises here given that she is president of the BSR. She charges far less to see patients privately than others and will not rush a patient or make them pay more if she overruns - which she often does.
So I would recommend her very highly for a second rheumatology opinion, as have many others from here. theshalbourne.co.uk/consult...
Man this is a tough spot. I honestly think neurosarcoidosis was a good pick up with the ACE levels. It’s very very difficult to diagnose because most are diagnosed from lymph node biopsy when systemic but in strictly neuro, a neuroradiologist should also have input. They are good at reviewing brain MRI and maybe your doc can look over scans with them to assess probability since neurosarcoid effects certain areas of the brain/cranial nerves.
I agree with Kay....answers seem pretty close at this point. Oddly I don’t know why they’d reduce your Plaquenil. This is sometimes used in sarcoidosis with other immunosuppression. 🤷♀️
I hope you get things figured out. Sending hugs your way. ❤️
My last pet scan showed nothing really anywhere else in the body !
Lungs clear !
My lymph nodes did have uptake but by the time I had a ultra scan it had gone down and had uptake in ovaries which I was told was pcos but then ruled out via gp because only one hormone tested was high and the other wasn’t !
My Oesophagus was inflamed throughout but that was it !
I think it would be wise for another scan ! Which dr Kidd has said he will do for me but not till the steroids have worn off so around May ! Xx
That makes sense. PET scans are a lot of radiation and are quite expensive. I’m surprised they use them so judiciously.
I don’t think there’s much you can do since they started steroids. I’m surprised they did this too without a lumbar puncture. LP can also be tested for high ACE levels and certain cells which would be more indicative of sarcoidosis. It complicates the whole picture since now you may never get to the bottom of the cause if the problem disappears with steroids. Both lupus and sarcoidosis would respond to steroids.
It sucks because they need to start treatment ASAP with vision problems but I think you need to talk it out with your regular neurologist. I don’t think he is right to just attribute neuro stuff to lupus. Although it sounds like he’s most trustworthy and respected, I’d definitely question why he is sure it is lupus (based on Kay response).
Geez. I don’t know what I’d do. I’d probably just take the steroids as you have but you deserve a better explanation than the one in that letter. Lupus and sarcoidosis have VERY different implications and problems. The diagnosis should not be a murky area between the two.
The ACE levels would make me lean towards sarcoidosis. Levels of 98 are pretty high and rising which suggests an acute episode, not chronic.
Jmiller - just wanted to make sure you saw what Dr. Kidd, who seems to specialize in sarcoidosis, lupus and optic neuritis, said about the ACE level. I don’t even know what an ACE is, but he did have an opinion about why Jade’s was elevated. He also did not think her brain MRI was consistent with neuro sarcoidosis. So is he thinking lupus-like without the other stuff?
Also, the neurologist who gave her steroids wanted to see if she responded before treating her with methotrexate. That doesn’t sound like a firm diagnosis to me. Are these two neurologists really that far off?
I agree it is a very tough spot for Jade. But can she really go wrong either way? If they were thinking MS or NMO, that would be different because the medications are not the same. But they still can’t force a diagnosis, right?
Hi Kay. I agree. Just responded. The 2 neurologists have to work it out. I don’t think they really did her case justice. There are so many things they could do to decipher between the 2 diagnoses.
As we all know, sometimes docs don’t pursue appropriate studies having pigeonholed us into an autoimmune box without the possibility that they could be wrong. Happens all the time. Dr. Kidd could be wrong but since he’s stuck on it being lupus, it might be hard to convince him otherwise. It’s a blind spot in my opinion.
ACE is angiotensin converting enzyme. Naturally it helps control our blood pressure and constricts blood vessels. Ever heard of ACE inhibitors like lisinopril, captopril used for blood pressure? For some odd reason, it is elevated in sarcoid. Many thought it was because it severely effects the lungs which produces ACE but studies show that it is also raised in strict neurosarcoidosis. No one really knows why it’s elevated but it’s a pretty telltale sign of sarcoid especially in the right clinical setting.
Hey Jade. Have been wondering how you are doing! You are definitely in a tough position with these contradicting opinions. Can't really say anything helpful but just hang in there. It does sound like they are getting closer to finding out what's going on though. Sending you hugs and strength for the next round of tests. X
I'm hanging in there. Hydroxy is starting to make life a wee bit better but still won't be running any marathons any time soon! Hope you get some answers, you really need them! X
Glad it’s working a little sometimes it’s not the amount it works it’s be daft it makes it more bearable and that something dose actually work ! Even if it’s a little xx
Go back to the hospital and get testing for whatever is deemed necessary. Sometimes you have to deal with it until you get a true diagnosis and that takes time unfortunately. I think it's unconscionable that 2 Neurologist are giving you different diagnoses and treatments and telling you that's what the other doctor would do. Go back to the hospital! Please
Jade, It seems, according to an NIH study in 2015, that the ACE test performs poorly in diagnosing sarcoidosis. It is neither sensitive nor specific. The conclusion is it has limited use in clinical practice. I don’t know how seriously to take this study. I do know that your neurologist’s differ in the value they are placing on the test. That is a difference.
Jade, I think I would continue for now on the path started with the Charing Cross hospital. Treatment and symptom relief take a while so do not fret yet if you are not getting better continue until you have tapered off, go to follow ups and if after treatment weakness and symptoms continue ask what the next steps are.
I like the "Jade diagnosis"idea. Every patient's disease coarse is individualized and treatment and even diagnosises are specific to just the patient. Oncologist now treat cancers this way and to me it is a good way to treat all disease. Individual treatment plans are the best route often.
I think it's very difficult for people to advise or comment on Drs by name, especially when perhaps we haven't met them ourselves.
I would say 4 things.
1. It is vital that you get a good rapport with whoever is treating you, if you are confused by conflicting info then maybe try and get hold of their secretary to pose a question or get them to go into further detail with you.
2. I think a brain PET scan is a very good idea as it is one of the best forms of imaging and isn't done lightly. Whoever suggested this has your best interests in mind.
3. I haven't met your neuro docs but I am a patient of Prof D'Cruz and find him to be one of the most exceptional doctors working within the NHS. And I truly mean that. After working in medicine for 15 years there aren't as many as thorough or open minded as him.
4. As for your eyes, it's rare to develop complications with hydroxychlorquine unless you have taken it for 5 years or longer. I'm not saying that it doesn't happen, just that it is unusual.
Good luck to you and I hope you get the clarification that you need soon
Dr Cruz stared to me it wasn’t lupus but ace levels can be raised in lupus too but you don’t have that is what he said .. and discharged me back to dr Kidd who still wants to proceed with uctd and treat as such but is willing to do scans
And I think that is it
Scans and see what’s happens because I do feel worse Generally maybe a scan will show more second time around xxx
'Jade Syndrome' is sooo you!! You have to go with your get feeling with which Dr is giving the most appropriate advice, but at least a diagnosis seems to be coming your way, at last. You're having a tough journey - bless you - and I'm sending huge cyber hugs your way. xxxx
Whenever I get two different opinions regarding diagnosis or medications I always ask my GP. They're able to see all the information in front of them and can often see past specialists subjective motives and ego's to analyse the truth of the situation.
Just my humble opinion - but the short course of high dose Prednisolone that was suggested won't hurt you're brain. Sometimes with Neuro inflammatory stuff you really have to choose the worst of two evils - and I think taking the pred short term - while unpleasant - would be you're safest option.
In the 20th century prednisolone was seen as a sort of cure all drug too so I don't see the harm in having a blast of the stuff while these symptoms are happening - even if they can't agree on a diagnosis.
Much to my own horror - Its not always the nicest Doctors who end up being correct either. The main specialist who oversee' s my care is utterly horrible - but she saved my life at one stage - when nicer less knowledgable Doctors where under treating me.
See you're GP ASAP so you can get some quick medical advice and help with whats going on now.
Thanks !! My gp is useless I’ve changed gp recently as my last was worse ! My current one thinks I should see someone in regards to dealing with a chronic illness and they never find the answer ! I don’t see why I need to see anyone I just want the Necessary tests just like everybody else and I would just like my neurologist to agree and come up with a plan to move forward instead of Batting and bowl between each other who’s right who’s wrong Whilst I’m sitting in a steroids not knowing which way to turn !!
I hate steroids I don’t see they do much maybe a bit difference dose not fix it though still feel ruff today !
Weak neck back muscles painful. Feeling like I have a crash helmet on constantly headaches jittery 😬 I just want my life back
I really am moaning now but I really have had enough
I’m so shocked how doctors are aloud to behave ! Xxx
I utterly agree - Doctors 😡....I don't like them much myself.......and most will go into - career protecting mode when they muck up - but unfortunately we have to front up to these discombobulating mongrels.
Go back to youre GP. Tell him you need medical help and advice right now - and show him the letter you posted.
Tell him you could deal with you're illness if you could be treated with respect and dignity and a reasonably concrete diagnosis could be made.
( Having said that - sometimes the people we're referred to regarding psychological stuff - can help clarify the truth about whats going on and act as a kind of advocate and help guide a Doctor into doing their job ( if we're lucky 🙄).
I know pred is not a fun drug to take - but given it's a short blast I think it's worth a try. But definately speak to you're GP about it -
They're the only ones that can see the wider picture. And ultimately they're the ones overseeing of you're care. There essentially responsible for this stuff.
I'm thinking of you.........I know what it's like to be in the same pickle with multiple conflicting opinions coming at you on the way to a diagnosis.
It's a terrible feeling - but you're definately not alone with this experience. It's more common than you think.
However - It's hard for me to imagine a specialist prescribing that dose of pred without having a good reason ?
I will book an appointment and see what the gp says but I won’t hold my breath!
Devils tic tacs I hate steroids takes one thing away and replaced it with jitters and anxiety I think I’d rather be in pain ! Trembling all the time !
Yes they gave it to me for my eye is again inflamed ! You would think with eye sight and brain still being effected they would be more concerned about Finding what’s wrong with me! But they seem to be happy to treat blindly !
When I see them again they will ask how did the steroids work for you and all I can say is I felt different not particularly better just different!
Obviously I don’t want to loose my sight so have to take them and it has calmed my eye but it’s not right still but that could be damage ! Damage that could have been avoided if I was on the correct treatment possibly maybe not but I guess I will never no !! It’s bad enough these illnesses but to fight for diagnosis is stupid !
I wouldn’t mind if there is no evidence but my brain scan has multiple scarring
My lymph nodes are inflamed
My ace levels are twice what they should be
My eye is inflamed and damaged
My Oesophagus is flamed
My thyroid antibodies are up slightly
My neck is weak and muscle twitching trembling
My hips are knackered ect
If they found nothing then I could understand even if my bloods don’t stack up they are treating me for inflammation with steroids so why don’t I get a diagnosis? What are you treating because according to them it’s mild and no real signs of a disease
Yet you have wracked me with a very high dose of steroids 🥴🤷♀️🙇♀️
And put me back on hydro and talking about immune suppressants
But my two neuros hate each other and actually don’t mind me knowing atal that they hate each other I think it’s personal between them !
Actually both told me they have caught the other one out with wrong diagnosis an that’s why there patients come to them !
Both have actually told me this !
Starting to think I’m just part of there argument xx
Yep. The fact that the pred is calming down the eye is a good start. Pred treats inflammation - and once the inflammation is supressed and you have some time for healing after that - you'll be able to see how you're eye ends up.
Give it time - as bad as pred is - its good stuff.
You do desperately need a proper diagnosis and I hope you get one very soon. Sometimes confusion and chaotic behaviour from Doctors comes before the diagnosis.
And...….oh yes.......competitive ego's of Doctors. Its really unprofessional of them to share their gripes with the other - with you. Obviously their concern should be for you're welfare - not their personal feuds.
I was caught in between two competing GP practices once who were feuding over patient numbers. It contributed to a very confusing delay in treatment - I was just a pawn to them. (very long story)
My current GP was one of the ego's that caused the war.
Its a case of trying to accept that Doctors aren't always particularly nice - but trying to look beyond this and - USE THEM for their skill. Try not to take them personally - see them as the tools they are - and focus on who you think is the better tool as apposed the biggest.
I'm pretty well at the moment - thanks. Some very mild bleeding from the intestine - but iron infusions are keeping me upright. The same old invalidating kerfuffle getting to this point...........but eventually made it.
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First diagnosis finally 
