Hi guys I’ve booked a privet appointment for tomorrow at the lupus center in London for tomorrow morning I’ve spent so long Being convinced it’s lupus .. as you know I have brain lesions and my mum had ms I was first diagnosed with ms but my neuro thought lupus he’s a ms specialist he seemed convinced. It would explain other problems I’ve had like bone marrow change in pelvis and joint corrosion tears etc and muscle pain for years and tbh pain everywhere that seemed to move around that was always put down to anxiety 😌👍
Since my m passed my symptoms have been headaches sinus pain and numbness pins and needles red flushing of cheeks mainly night Time temp swings and a itchy red bumps rash when I get over heated ie night time dry mouth tongue and eyes feel like burning and feeling like I have flu coming. My face swells one side slightly and I have muscle twitching and muscle jolting problems with my throat on and off . My pet scan showed inflamed lymph nodes in my neck and lumps on my overies and inflamed oesopigus or how ever you spell it .. all my bloods are negative low bit d and iron that’s it and my lp was negative too . Am I just clutching at straws because I don’t want to have ms like my mum and I do have many non specific scarring on the brain 🧠 but my lp was negative for ms too . I really am trying to help myself am I wasting money or dose this sound like lupus to anyone else please xxx
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Buckley123
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I know a few of us have taken this route and gone privately. I explained at the first appointment I couldn’t afford private healthcare.
Professor d Cruz I saw and he wrote to my doctor asking for a second opinion referral to him under the nhs.
Now it might not be lupus, but he knows his stuff and will run bloods for loads of anti bodies.
I spent years trying to find answers, being told I was mental. Within 4 weeks of bloods being taken I was put on immune suppressants and finally told I was right all along.
I’m still undergoing further tests to check for internal damage, all tests ordered and booked within 7 weeks of receiving a positive test. This is in my opinion the best way to go
Yes I think it’s the same place .. I have had so many bloods already a good 15+ tests I’m just so nervous it’s just going to get rare and rarer an no one will be able to help me my main worrie xx
Honestly just go there with as much detail as possible. He read my diary, he looked at my photos , he looked at my skin and did a dry eye test. This is definitely the place to go.
I had loads of bloods before, I took all them results with me and he still suspected auto immune disease.
The list of tests he did, was pretty endless. Me and the nurse who took the bloods did have a good giggle as there was so much.
I’m pretty sure most of the tests he does, you haven’t had taken before.
When I went there my attitude was, if he can’t help me then I’m barking up the wrong tree and it wasn’t an auto immune disease. Keep your mind open and be strong. To go down this path you know you are unwell. It’s the last desperate attempt to get answers.
I’m still waiting for the medication to kick in, but I’m more content knowing at least I am being treated
Good luck for your tests tomorrow I hope all goes well. Please keep us all posted. I have 3 cavinomas ( vessels) in my brain along with other conditions of fibromyalgia and M.E to name a few I’ve felt unwell for years and I still know there’s something more so go with your gutt feeling and good luck xx
Thank you xx minds are scars which is why I worried about ms but my neurologist thinks not so I’m not sure xx please keep pushing if you think more health is wealth xxxx
Dr. Kaul maybe it’s just not lupus my neuro was so sure until my bloods came back I guess it’s not lupus and I guess I’ll have to wait I just don’t feel very well xx
Dear Buckley, I recognise throat problems. I had tremendous difficulties swallowing at the start of my severe flare and thought that I was very likely to choke. I resorted to drinking through straws to help and I still use straws when my throat swells up. Lupus does impact the whole of the intestinal tract so I have come across this symptom again and again during the course of my research. Feverishness is also common. Being told that the cause is mental comes up again and again. I wish you the very best of luck with your London Lupus Centre appointment but I agree with Lisalou about being clear about being able to afford the extensive tests (blood tests, muscle tests) which may be required. I hope that you will let us know how it went if you feel up to it. With very best regards, Lily
Hey there - what are your complement 3 and 4 levels like? And your neutriphils? If these are all low, plus you have a raft of classic lupus symptoms they should definitely look past the postive ANA issue. There are a lot of seronegative lupees out there. I am one. But my top expert Rheumy diagnosed me due to my bloods and full on symptoms. Also, accrding to Dr Wallace (author of The Lupus Book) people who have had SLE lupus for decades can have blood that no longer shows positive ANA,, that was a new one on me.. I have had it since birth he thinks (and certainly have a lovely pic of my with a malar rash at approx 3yrs old sitting on santas knee - er in the 1960s! Dont forget to check the following............... uptodate.com/contents/diagn...
and of course, the latest diagnosis guidelines (a link at the bottom of this article by the wonderful Lupus UK! : lupusuk.org.uk/bsr-guidelines/ . Paul at LUK sent this to me originally, after having a really helpful conversation with him about everything just prior to diagnosis. Please call them if you feel you can to discuss... and there is also lupusuk.org.uk/getting-diag... which is sure to help you right now..... Maybe read that one first?
Hope that all helps Buckley!! All the best and let us know how you get on if you feel like it. D x
Hi guys thanks for all your reply’s .. so I went to London 2 trains in the snow wind wet and cold to see this lupus expert and he wouldn’t really Liston to me about my symptoms because I didn’t have a positive ana or dna test he said it has to be one of the other. He said I had hyper mobility for sure but what ever is going on I’m my bones lymph nodes and brain it isn’t lupus .. back to square one .. gutted to say the least so it means I’m still without treatment. Xxx
I am curious why you feel gutted. The purpose of going to a specialist is to get an expert opinion. It is as important in medicine to know what something is not than to know what something is. I know you have had a particularly hard diagnostic process with a rare autoimmune disease. But, realistically, most people who have had symptoms and abnormal brain MRI like Buckley can be diagnosed by an expert if it is lupus.
Did the doctor offer an alternative explanation? I think when he said it is not lupus because of negative ANA and other tests, it is because your total picture does not look like lupus to him. If you had the same MRI results, hair loss, inflammation in your joints or the lining of your lungs, that would paint a different picture. Is there a reason you think you have lupus? It is usually best not to try to diagnose yourself because there are so many possibilities of what could be wrong. I hear your disappointment and know you want an explanation for your symptoms but think you might be better of asking your GP for other possibilities like a neurology consult going forward.
Hi thanks for your your reply I am under a neurologist who thought it was lupus by. Looking at my mri and other symptoms but my bloods were negative and I did a lot of research that says that ana negative lupus can happen or ana can fluctuate so I was hoping for answers finally so what ever is attacking my brain could be treated and I could get some meds and feel better.
I’m defo not trying to diagnose myself but to only help myself as my doctors don’t seem to be doing much atal al they know is that it is a neuro inflammatory condition it’s just pining it to one.
I was hoping that the specialist that I saw would be more interested as he was a a rumatolagihst xx
I do not think it was that he was not interested. Neuro lupus and other conditions are challenging but important to distinguish. I think the doctor was likely using every bit of knowledge that he has to try to determine whether your symptoms are consistent with a rheumatologic condition. It may not be clear yet. I think this is a big challenge in medicine, and I really feel for your dilemma. You might want to ask your neurologist now how he wants to proceed now that lupus has been ruled out. Does he want to start treatment with a presumptive diagnosis? Keep us posted.
Did the rheumatologist do more blood tests? I thought I saw where someone mentioned “sticky blood” to you. That is a sort of lupus - CNS link. Did your knowledge test you for those antibodies?
Hi there I’m so terribly sorry your appointment didn’t go how you hoped I kept thinking of you.? Ohh goodness what did he suggest to do now ? Sending gentle hugs 🤗 x
He mentions more blood tests but I can’t afford them priverly and my go dose not have access to them so I will have to wait and see my neurologist next month
He said mybe sticky blood
I just wanted to know yesterday do so I can move forward with help to feel better xx
Looking back at your post, I actually think you had a very positive consultation. The rheumatologist is ruling out lupus because of both the lack of other systemic involvement and because of your negative antibodies. On the other hand, he is in agreement with the neurologist that there is lupus picture to your neurological issues. This is as tough as it gets! The sticky blood refers to certain antibodies that lupus patients and others have that cause certain neurological signs. Many of us have them. So you may actually be finally down the right track. The doctor is referring to APS. He is likely an expert in this too. So your visit paid off. Can you authorize the rheumatologist and neurologist to talk? You might want to post on the APS forum. You will hear many people going through similar experiences. If the rheumatologist’s suspicion is correct, there is a lot of hope for you.
Peace of mind and getting the right diagnosis/treatment is priceless. Symptoms do overlap and getting the right diagnosis can take time. I'd say you are taking sensible steps to get to the answer. I hope you get some useful results from the centre. Best wishes
Yes that’s so true they all over lap the doctor says he knows it’s autoimmune neuro inflammatory but what one I just want to feel better and try and help myself not end up like my mum I want to be hear for my children x
Hi. I haven’t gone privatelyy although I certainly would have done if I’d needed to. I’m writing here because I am sero negative and always have been. Disgnosed in 2001 and changed rheumy in 2011. New rheumy was unconvinced so sent me to professor Gordon in Birmingham (internationally renowned lupus specialist, now retired). I didn’t want this referral and made no effort to present my case or show photos etc plus, IMO, there was not one jot of doubt about my dx. My bloods remained unrevealing but she was able to see the rheumatological autoimmune disease that is present - these people are experts and I’m sure your appointment will be money very well spent.
I’ve just seen your update. If its not lupus then you’re lucky and even luckier not to receive inappropriate treatment. The next step is to unpick what actually is going on. Keep pestering your GP, persistence usually pays off xx
I understand If it isn’t lupus then u don’t need that treatment. It’s just frustrating to keep having test and being told it’s not that or it’s ms and then wait no it’s not it looks like lupus wait no it’s not .. the whole time I don’t have treatment the wait between appointments seem to be getting longer and I’m having to pay to see people on the back end of a comment just because I can’t get to see anyone for months on the nhs. I feel hopeless 😩
I just watched my mum pass away from ms 6 months ago and I’m being told to stay stress free but it’s impossible. I have three small children and I want to be around for them so desperately.
The lupus spealist did say I haven’t had all the bloods I could have and he couldn’t understand. He mentions sticky blood a lot so I guess i will have to wait and see what happens xx
I was in a desperate state and saw Dr Kaul at the London Bridge Lupus Clinic, private appointment. I wish I had gone there sooner. He is brilliant. And I’ve been 3 times now and will be going again sometime this year. It’s a very well respected hospital - the only lupus dedicated private clinic in the UK. People travel from all around the world to go there. So relax, you’re in very good hands. Good luck! I hope you get some answers!
Sorry, I realised afterwards that you’d already had your appointment. My sister has seen Dr K and I know of others who have. If it’s any consolation, he does know his stuff. If it was lupus etc then he would know. Do you think you’ve got to point that you need a spinal tap to get further? Pardon me, if you’ve already said this. Just thinking aloud. Must be very frustrating for you, not having a definitive diagnosis. Best wishes, Wendy
That’s a shame. It’s not like anyone wants one of these illnesses, it’s just we know we are ill and need a diagnosis to get the right treatment. Good luck.
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