Hi everyone,
Our next live virtual seminar will be at 6pm (GMT) on Wednesday 17th March 2021. This next event will be on the topic "Lupus and the Brain" with guest presenter Prof Anisur Rahman.
If you would like to join the event, you can register for free at lupusuk-virtual.org.uk
If you're unable to join for the live event, please register anyway. The recording will be uploaded to the 'Video On Demand' section of the site within a couple of days.
Definitely watching this one... need some top tips on how to manage my omnipresent 🧠 🌫
Obviously I’m biased! These seminars have been excellent and are all the previous ones are available online. Best wishes Kevin
I would usually agree with you Kevin as the previous ones have been excellent.
I found this one extremely concerning and dismissive of the many life- changing neuro symptoms that many people with lupus have and totally at odds with what many of our doctors have told us and what our own experiences tell us and that of other people on these forums.
Obviously different doctors have different opinions and levels of knowledge about the neuro- side of lupus but almost everything was said to be extremely rare and dismissed as fibro, sleep issues etc, - everything from brain fog, headaches, autonomic dysfunction etc either too rare or not the lupus.
This is very uncomfortably- and potentially dangerously for people then not seeking help for symptoms which can be improved by improving the lupus - at odds with our experiences as patients and current research showing the prevalence of neuro- lupus is actually much higher than previously thought (at least 50% may have some form of neuro- involvement)
I did however miss the first part so if anyone else saw that was it maybe more in line with current practice, knowledge and research, and our experiences?
Did anyone else watch it? X
Wouldn't it be good to have a patients' 'right to reply' to counterbalance doctors' views that directly contradict patient experience....? Strength in numbers.. xxx
Yes! But it also didn’t just contradict patient experiences, it also contradicted research and eminent doctors in this field - and had opposing views to lupus UKs booklet on the brain and lupus written by Prof D’Cruz, a renowned expert in this area.
Everyone is entitled to their opinions obviously but to state them as if they’re fact is concerning and how a lot of misdiagnosis happen in us 🙄 and how people don’t then seek treatment because they’ve been told they just need a good nights sleep to improve brain fog... if only it was that simple?! Xx
There is overwhelming evidence that SLE can and often does have a major impact on the brain as a result of in particular brain inflammation. The "cytokine storms" which are a feature of severe covid can be a regular event in SLE. This brain inflammation can manefest as fatigue, cognitive impairment, anxiety, depression, psychosis (especially in early SLE), and audio-visual dysfunction; and can be as much or more debilitating than "physical" symptoms.
But what can be most damaging is when it gets dismissed as health anxiety by some GPs and other physicians with limited knowledge of SLE and who are in some cases a couple of decades behind with their journal reading.
Here is interesting recent article about SLE and cognitive function.
ard.bmj.com/content/78/7/93...
I should stress that Ive not yet seen the Lupus and the Brain seminar but will when its available again. And so Im not making any judgemements about that presentation.
Im just referring to problems with diagnostic overshadowing indicated in the autoimmune literature, difficult and sometimes nightmarish diagnostic journeys recounted in these forums, and my own experience of having to eventually go private and see the excellent Drs Nash and Kaul to get started on medication for APS.
The strangest thing was my GP at the time maintaining that it was psychological despite a brain MRI lit-up like the heavans; and him even intially argueing that it was all in my head when my hands and feet swelled-up and my legs turned an attractive blue-purple colour. One of the worst symptom was having (at last count) about 7 loud tinnitus and pulsatile tinnitus sounds developing over about a year and being told by the GP that it was just the result of normal hearing loss. Even 12 months under artilery bombardment in the First World War trenches wouldnt have caused that much tinnitus!
Mela1 -
I haven’t seen the video. I will try to access it as a foreigner but did have trouble seeing a recent one.
I agree with you that there is a huge range of opinion in the neuro lupus arena. So much is speculation and being researched. To present most of the neurological issues in any black and white way - and as a fact - sounds contrary to how my neurologist sees it. I am shooting in the dark here, I know. But I would think we would get a different view from a neurologist who really specializes in autoimmune disease. There seem to be a few in London.
Getting a good night sleep is always important but most of us have been dismissed too long to not find that angering.
Neurologists have not focused on autoimmune disease until recently. I do think knowledge is taking off. Their training is completely different from a rheumatologist’s - totally different track of studying only the nervous system.
I bet you my neurologist (he specializes in autoimmune disease) would have a different take. Of course, I don’t know what the doctor said yet. 😅
The doctor who spoke specializes in lupus and APS. He should know a lot. But that doesn’t mean he doesn’t pass « opinion off as fact » as you said.
Xk
So glad I wasn't alone on this Melba1 I also thought the same. The speaker was a classic case of the close mindedness we have to deal with regularly. It was very sad to watch. I loved all the other seminars but this one was not great sadly. No discussion about other treatments that might help, just the classic default of it's not lupus not a concern for rheumatology, move along. Rather than discussing other solutions, therapy etc. No discussion of other stats and studies either. Just reference and reliance on one study done more than 10 years ago. 
I have anxiety attacks at the same time that I flare which is when I get my period. It did not happen until I developed lupus. Maybe scientific research hasn't worked out the why yet but saying this is a random coincidence or psychological only without any evidence that it is, feels insulting.
The main positive of this seminar for me is that it demonstrated the nicer more polite end of the dismissiveness spectrum we often encounter and experience.
PS I generally start to view rheumys as suspect when they utter the word fibro... that's the constant go to because then they don't need to try to even address symptoms if they can chalk it up to fibro.
Oh sorry about the anxiety attacks, that must be horrible and you’re so right, we just know when these things are connected to the lupus.
I’m the same with headaches, autonomic problems and cognitive problems (the brain fog he talked about so dismissively). I didn’t get them before I had lupus, I get them when my lupus is active, they get better with steroids, so really very obvious they are a part of it.
But that needs doctors who listen to their patients and don’t dismiss everything they can’t see or don’t understand themselves as fibro 🙄 or needing more sleep 🙄
I’m actually diagnosed with neuro- lupus by both rheumatology and neurology but I fear for this doctor’s patients who then wouldn’t get the right treatment for the active lupus causing these things as his views were very outdated and a real fibro pusher.
You’re right though that a positive is that it is very good video evidence of the ‘polite dismissal’ so commonly faced. Polite is still dangerous though when people then don’t get the right diagnosis because of a stance a particular dr is taking.
I guess the key point is that it’s just one doctor and there are so many views of neuro- lupus that anyone who has neuro- problems should seek out the right doctors who know enough about it and listen to their patients... xx
Hi Paul this is right up my ally, so to say. I need this. Do I have to be in the UK to do this one. Stay well, and safe, and blessed, Regards, Thestormy sunshine
I'm having a go from Australia. Been able to log in and look around. It will be 4.30 am here though 😳😴.
Hi Freckle, I was not sure on the time, I think it was 2pm or 1p.m. eastern on the east coast of America, or USA. and we just changed the clocks in this country, spring ahead time, lost an hour of sleep, gained an hour of daylight. Where do I live, LOL... I had a unplanned Specialist appointment today, at 3;30 p.m., So I was not lucky enough to participate live. I had some questions, and was so excited to be able to join from here. My new medications gave me a reaction, I had to go into the Doctors office, sadly. I hope I can watch the "On demand version", of this seminar. I was really looking forwards to the virtual one. How was it Freckle? WOW, 4;30 am, you have to be a night owl. Bless you for letting me know, and thank you for the reply. Be well, blessed, safe, and loved, Always, Thestormy sunshine
Hi Storm,Yep - much confusion getting the time right here too 😮🙃😖😁 . Had to sit down and use a calculator - and even then......
I watched it because I'm on a lot of pred at the moment - so sleep is a bit random at best.
I'm going through a neural flare at the moment - so I'm on a bit of a steep and subjective learning curve.
I found what the Rheumatologist said re- assuring but some of the things were a bit odd. Much of what he was described was different from my path from symptoms - testing - neural flare.
It's - so - so -difficult- because we're all different.
I believe there's much to learn about Lupus and the nervous system and I think this guy came from a strong Rheumatology perspective where they're on the look out for signs.
I've had a lot of problems with Rheumatologist under - estimating my symptoms - so I'd always defer to a good senior neurologist if I ever suspected more problems.
xox
Hi thestorm . These events are open globally. It will be live from 6pm (GMT), so just check what time that will be for you locally.
Thank you Paul👍
