Gosh...following on from mousey1's post today, I've been messing around online refreshing my memory re vertigo etc & lupus when I discovered a VVV interesting and respectable professional oragnisation's website with well presented bang up to date info on the matter. It's an American organisation called VEDA (Vestibular Disorders Association):
I know this interests many of us here, so here is a link (systemic lupus is actually mentioned):
vestibular.org/autoimmune-i...
🍀🍀🍀🍀 coco
That link is very interesting Coco, thank you. I was diagnosed wit Eustachion Tube Dysfunction around six years ago. It's never been suggested it could be autoimmune or part of the jigsaw puzzle my doctors need to put together to come up with a diagnosis. Now I wonder if it is.
👏👏👏👏🌟🌟🌟👍👍👍...hope you'll let us know how your medics react to this question 🍀😘
That link is amazing!
I am going to shove it every which way under my Ent consultants nose.
Having diagnosis of Sle,Rheumatoid Arthritis and Sjogrens plus the Eds and previous thyroid neck cancer and subsequent surgeries and radiation therapy it has been very difficult to get acknowledgment of the sudden hearing problems, tinnitus and sometime vertigo and which or what could have caused it.I have long had an idea but this I can show them.
Thanks again xx
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Hello again
Following our discussion about osteonecrosis yesterday, I read this post. Over the last few years, I have been developing inner ear vertigo problems. My GP thought it was BPPV ( Benign Paroxysmal Positional Vertigo) which in a nut shell seems to mean there is debris in the inner ear.
However when I read your link, the auto immune issue sounds more plausible. Also I only get vertigo symptoms when I have a cold, cough or flu. When I do not have a cold or flu etc, I do not have vertigo symptoms.
The auto immune article is really interesting but the difficulty is translating it into an NHS pathway and finding a specialist who buys into the thinking. If anyone comes across an ENT consultant who buys into this thinking, my ears are listening!
Seeing my Ent consultant start of June so will let you know how i get on.
Yes please! 🍀🍀🍀🍀🍀💃💃💃💃💃
Which city/town is your ENT consultant based?
Coco this is a great article thanks. I've asked to be referred to an ENT doctor several times but never got anywhere. Perhaps it would just be yet another brick wall as others here have described?
Because of the bruxism and neuropathy my disequilibrium is blamed on altered proprioception - it only happens when I'm walking so the neuro could be right about this but I also suffered from exactly the same thing about twenty two years and I didn't have any neuropathy then. My gp thought it was Bell's Palsy at the time. I don't think I have any hearing loss though so maybe it is all neurological/ neuropathic with me
However I've had nasal sores and severe nose bleeds for a few years now and trouble swallowing. I feel this must connect somehow with the bad taste, lack of sense of smell and all the rest. I'm not saying the neuro is wrong to rule out vestibular issues as cause but it would be more reassuring if doctors investigated the possibility at least. Also, if it's not autoimmune related then why would my longstanding disequilibrium (as neuro calls my dizziness) have disappeared when I started 20mgs steroids last year?
I'm too busy trying to sort out my tummy/ bowel issues presently to pay much heed to how dizzy I am, but also driven close to madness at all this firefighting, as so many others here experience also. We are one body, all connected, but somehow we get split into component parts like electrical goods? I'm very able bodied these days but what use is this if I feel so stoned, fatigued and out of kilter when I walk anywhere?! X
Means a great deal to me that you find this link useful 🌟👏. Knowledge is power. Understanding is power. When specialist medics share info the way they have on this website I want to celebrate 🎉🎈🎊🍾🍰. There are some good medics out there...just wish we could all fly out to Oregon to consult these medics
++++: twitchy, as always, your eloquence stands for each & every one of us who has endured years/decades of trying to understand what's underlying our multisystem health miseries ..while dealing with blank-faced info-withholding medics....and I shudder with deja vu...as your words take me back to those bad bad years from my 20s-50s....Yes, things are better in many ways for me now my immune dysfunction is acknowledged & multisystem treatment plans are helping...but I'm still that traumatised woman...with every fibre of my being rebelling at the ordeal people like you, like us, endure when the knowledge IS actually out there...e.g. on this VEDA website
I KNOW you've got a valid point re the significance of steroids damping down your vertigo. I know too many others whose ENT-related vertigo responds positively to pred (And mine certainly does, + it responds even better to pred + low dose myco!) but quite a few of those with complex persistent pattern vertigo remain clueless re the actual cause/s underlying their steroid-responsive vertigo. I even know one guy who doesn't mind the not knowing/understanding...just so long as he can get pred when he needs it....he is a vvvv successful & powerful man...his medics fall over themselves at his beck & call. I'm not successful or powerful...I'm not like him....I need a degree of comprehension or i don't put up with this health stuff so well...and I feel vvvv lucky to finally have got hold of some medics who are being more forthright with me...but I still need the solidarity here on forum + the respectable expertise of website's like VEDA's. Thank goodness for the internet & for our wonderful forum
Hang in there twitchy
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No way am I going to let you get away with That about yourself .You should see you from where I am.
I think you are very successful and powerful as in explaining,helping,finding amazing medical informative gems and giving the greatest advice and encouragement possible to all the folk on here and I am 100%sure that all others would agree.
So there dear coco that's how it is no argument!
effie x
😘😘😘😘😘
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Just back from appt no4 in 12 months @ immunology...this time saw the Big Chief who is not happy with my vaccines response (non existent). So, he is closer to going for IV IgG treatment, but first he wants me on daily prophylactic antibiotics for 3 months and maybe stop myco (please no, am thinking...after all this immunodeficiency existed for years before I started immunosuppression...without daily myco am thinking: hey, I'll need a higher daily dose of pred...anyway he will decide in liaison with my big chief of rheumatology), meanwhile he has booked me for an urgent CT of sinuses & lungs...& also booked to see immunology again in 2 months
I'd so love to avoid IV IgG....monthly infusions ad infinitum, or self-injections @ home
But it is what it is
& on & on
Kept thinking about your infection ordeal....
XOXO🍀🍀🍀🍀
Ooh stopping myco,adding antibiotics and IV IgG all in same few weeks ? No wonder you're thinking ???
At least seeing big chief immunoboss means you are getting the best poss plan with all sides covered CTs and 2 month follow up and discussion with rheumy boss chief to ensure all goes as smoothly as it can.
Feel for you though as big change of meds and IV/injections but with no vaccine response better to be safer than catch the sneaky horrible virus/infections going round year on year.
Here for you whatever they decide is your next round of plug and play experimental medication.
Is any of this going to affect or alter your down under treatment/tests? I presume they will keep all that in mind whilst carefully monitoring you?
Thanks for letting me know.
Ps think you may need some more file boxes to keep all this extra organised.
Take care xx
WHOA: not quite that timescale, I hope! First the 2 Chiefs put their heads together re myco & daily prophylactic antibiotics, meanwhile CT + I'm involved in discussions re myco & daily antibiotics. 2 months on blood is retested & I'm @ immunology clinic. If my Igs haven't improved we reconsider...IV Ig will be part of that reconsidering. So all this could take months. Meanwhile we'll see what the PMDT gyn makes of my this Friday. Wish I felt poorly...but instead at the mo am feeling better than I have for months. It's hard to reconcile/process all this.....
XOXO
👍👍👍👍. So, this 'Manoeuvre' clearly works in cases that aren't about underlying primary immune dysfunction. When NHS ENT investigated me in the '80s the chief consultant didn't even dare suggest this 'manoeuvre'...cause he'd seen the MRI of my dodgy spondylosis neck. He told me I'd be in a wheelchair by 50: upset me no end. And yes I was using a wheelchair by 50, but only as & when. Meanwhile my version of this vertigo is complex, persistently flaring and non positional...and my hearing is affected ie the nerves, not the actual ear organs. They hope things like the 'manoeuvre' solution will work on a majority, no? And if it does work: good. But when it doesn't...
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Thanks...& the same to you 🤗💃
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