As Lisa Lou Knows my bloods have nearly all came back negative from the London lupus center few outstanding but dr s made a point of calling me to tell me he was right all negative 👎 (apart from a few her to come back)
He let me know he’s going to write his letter advising nothing can be found to back my uctd or lupus like possible diagnosis and is going to recommend to my neurologist to stop hydro.
I feel now this is all pointless
I still have headaches
Brain scan issues
Lymph-nodes issues
Temp changes
Throat issues (swallowing)
Muscle weakness
Muscle twitching
Tongue twitching swelling
Joint pain and corrosion (hips)
Dry eyes
Blurry eyes
Sore throats
Heavy ness in the face and odd rashes that are apparently nothing 🥴
High ace results.
I’m worried I will now have to come off hydro and feel even worse..
I appreciate everyone’s kind words and help over this hard time as I have found this all very difficult after my mums death and you guys have been my life line
I would very much like to stay as my neurologist has said I will have yearly scans of the brain to keep a eye on it.
Much love 💕
Written by
Buckley123
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Well, this is a really, really tough position for a patient to be in. You did not choose to see this doctor as a second opinion. He was assigned to you. If that is the way the NHS works, then you may not have a choice. On the other hand, if you can choose to go back to Dr d Cruz, then, of course, do so. Both doctors can justify their positions, I think. Many would agree with your last rheumatologist that a patient needs to show some evidence of autoimmunity in bloodwork to be given a diagnosis of UCTD. But there are no guidelines currently. Dr. D Cruz is very experienced and has his reasons for making the diagnosis like what he has seen in exam and your MRI.
I wish I could offer more support. I do think the neurologist is key here and, as you pointed out, he will be following your MRI. Unless there were significant changes, they would not change your medication. At least that is what I am told about my MRI.
Really hope you get answers on how to move forward.
I’m really sorry to read this. Is it possible that you make another private appointment to see Prof D’Cruz again to tell him if this latest development and ask his opinion and see if he recommends you stay on hydroxychloroquine or what his next step would be?
No we shouldn’t have to pay, but many patients do. You have had the opposite opinion from both Drs so I think it’s reasonable you see him again.
It took almost 15 years for my body to show more than a uctd. I’d have flares but suffer through. Thankfully back then (not that long ago) the mantra was to treat the patient and not the test. I’m sorry about what’s happening to you. (I also refused my diagnosis for a few years.)
May I suggest to help with some coping techniques and physical changes you have a therapist. My therapist stood up for me when I collapsed at work and made sure no one took me down the wrong path. She had gotten to know me over the years and her notes came in handy. Just a thought.
Chin up. This is a turn in the road not a dead end. For now it seems your very real symptoms and illness might not necessarily be lupus or uctd and ruling those possibilities out might help find another cause.
This doctor still feels you need following because he too believes things are off with your body presently. I only see my rheumie once or twice per year generally and he wants you to be checked within a year too. You are also still under the care of a neurologist so if things get even worse they can investigate things further.
Was the HQC helping? If so discuss this with your neuro. If you have not seen vast improvements then it is best to try other treatments. Ask the doctors how you might be able to improve your symptoms moving forward. Antiseziure meds for migraines, ace inhibitors for your elevated levels, surgery or cortisone shots for hips. Etc. you can find help for many of your symptoms with or without a lupus diagnosis.
Just a quick thought have you been tested for a genetic disease called gaucher? There are three types and type three can mimick MS and it causes elevated ACE.
I do not think you have it but it is a differential to consider outside of the two, lupus and ms, you have had investigations on. You would not have the type2, which is a dire prognosis, 1 and 3 are slower in presentation and have pretty good life expectancy and slow progression with enzyme treatments.
Internet stats are always dubious. Many studies have life expectancies above 68, so yes not great but they are improving and they get better every year with new treatments and you most likely do not have it. I just think since your uctd tests are inconclusive it might be a good time to look at other differentials outside of lupus.
Of course you’re not a fraud?! Keep on keeping on and whatever is ailing you will make itself clearer one day hopefully soon. It did with me.
Meanwhile, given your dryness, neuro symptoms and swollen lymph glands, have you considered having a lip biopsy for Sjögren’s?
Watching this short video might help you feel a whole lot less fraudulent - she speaks of 9-10 year wait for diagnosis. Maybe you could ask Dr Le Cruz for a lip biopsy - mine was fine and 100% Diagnostic: youtu.be/GG3qxAvOVyc
No way are you a fraud! Blood tests are one part of the puzzle and for some people they take ages to catch up with what is actually happening. Prof d'Cruz didn't think you were and he diagnosed you on symptoms. Are you seeing him again? And if the hydroxy is working that can help to confirm diagnosis too? Sending you hugs and lots of strength. It's so exhausting to have to keep fighting when you just want to get better. Xx
You’ve got wonderful replies 👍👍👍👍... the way you’re feeling is only natural...and many of us know this feeling all too well...am so glad you’re here...courage‼️
I am so very sorry. I feel your frustration and fear. I am very much in the same position as you as after 10 years of being diagnosed with Lupus, Bechets and APS my new Rheumatologist dismissed previous diagnoses and took me off Hydroxychloroquine. He too dismissed the diagnosis from St Thomas’s and said all I have is Fibromyalgia based on one blood test. Like you I am now feeling like a complete fraud and wondering if the past ten years I have made myself ill as he said. Clinicians differ because autoimmunity is so complex. They see you for 10- 20 minutes. If I were you I would definitely seek a second opinion. I wish you the hope of a better tomorrow and send you Cwtches (Welsh hugs)
Hi. Unbelievable!! How can they say this when you have been previously dx'd with Lupus and other AIs?? Do you have evidence to support the earlier dx's - bloods, photos, etc?? xxx
I have files full of doctors reports. I actually offered to send them to him but he said and ai quote “ you have had crap advice”. To be honest I was so flabbergasted that I was struggling to make a coherent response. My carer tried, telling him she had seen macular oedema on my eye scan and was there when the Optician said I had no peripheral vision in the lower left quadrant. He said the Optician made a mistake and that my brain fabricated the issue out of a stress response?? In other words I made it up. He said I have one or too like you on my books that get referred everywhere Nd there is never anything wrong. You need to accept that the only thing wrong with you is Fibromyalgia. I asked him based on what as he did not have my notes and had not examined me. He said your CRP levels are low and you don’t sleep so you have it whether you like it or not. I am still reeling. I was taken off Hydroxychloroquine temporarily in June as he had prescribed 600 mg daily to try and ease the number of flares. When I started getting headaches and my yes were blurry I made an appointment to have my eyes tested and they found the macular oedema. I saw him as an emergency appointment in July. Sorry this is so long and convoluted but my fatigue is quite severe at the moment.
Hi. Your journey is beginning to sound a bit like Buckley's and it's a very sad state of affairs. Yes, AI problems are tricky to dx but to completely reverse the decision of a previous specialist just seems wrong. My advice - for what it's worth - would be to speak to your previous rheumies secretary, or PALS, to explain the situation and ask for clarification. Gentle hugs. xxx
Thank you. My previous Rheumatologist has moved on and his post has not been filled. We do not have PALS in Wales sadly. I truly hope the post is filled and I get a Consultant who actually examines and listens to me. Cwtches to you xx
Hi. I'm so very sad to hear this and I totally understand how disillusioned and scared you must feel. I still can't get my head around that two specialists working closely together can give such different dx's. When you're up to it, my advice would be to speak to Prof d'Cruz's secretary to explain the situation and ask whether it would be appropriate for him to contact you for clarification. Thinking of you. xxx
Oh god.... This is so tough lovely. You are not catching a single break these days. Just want to send my support along with all these other caring souls.
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Muscle twitching
Numbness,tingling limbs, memory,balance and speech,fatigue.. the list goes on.. referred to neurologist but all results r FINE! now what!!
Feel Like a Hippo
