i was joining in a good discussion on this subject on the HU vasculitis forum yesterday and decided to follow that up with a bit of searching online. i've been managing my version of inner ear conditions for over 30 years now...having been thoroughly investigated & diagnosed back in the early '80s by NHS ENT (BPPV (paroxysmal positional vertigo) + vestibular neuronitis (labyrinthitis) complicated by various chronic conditions in my cervical spine)...but back then, the NHS hadn't spotted that infant onset SLE was underlying this ENT stuff + all the other multisystem secondaries various clinics were diagnosing & treating me for.
anyway, my search yesterday came up with this link. over the past 4 years there have been lots of us discussing this subject on here, so i thought this link might be useful. the organisation seems an especially good one too (based here in the uk). it'd be interesting to see what experience it has of patients with SLE and vasculitis.
OOOOH😳 am turning vvvv pink....but you do make me feel good😘...it's just that if I have any expertise at all, it's just re my own version of this stuff...and no matter how much I learn, I never stop feeling as if there is LOADS I don't know...and I'm constantly learning so much from you, twitchy, and all our friends here on HU forums. XO
Good morning Barnclown. Hope you are feeling ok today.
I had the same problem many years ago. Ent couldn't find anything wring then. So lived with the symptoms dizzyness balance etc. About 4 years ago my GP sent me once again to ENT. Had all the tests (balance, checking the crystals in inner ear not moved). Again nothng found.
Thanks for your link I will read with intetrest over my tea and toast! X
GGGRRRR, BOO HISS: we do go through these horrible ordeals: investigating consultants who can barely even see the end of their noses...no way does this type of medic have the insight & experience to recognise autoimmune system involvement unless it's staring them in the face....and even then this type is known to be blasé enough to claim there is no such thing as lupus, or whatever.
Babs, am so glad you've got beyond that type of medic. Now you're being investigated by real autoimmune condition experts, I want to believe these medics will go some way to explaining the dynamics underlying your version of chronic dizziness/vertigo + all your other chronic multisystem symptoms. My feeling is that the severity of your symptomology means you're finally getting attention from real pros...it's a tragedy things had to get this bad before you got this attention....
A few years ago, when my lupus & Vasculitis clinic trialed me on pred & then myco, we discovered these 2 meds did a great job of damping down my chronic vertigo....our view now is that back in the '80s, my ENT consultant got the basic ear-related diagnoses right...but the NHS system let me down in that no moves were made to follow those ENT diagnoses by searching for the underlying cause of ALL my ENT stuff (at that point I also had been living with chronic sinusitis, nasal lesions, bullous throat lesions & boils etc). It took another 20+ years before the NHS finally connected the dots in my case (and haha 😈 by then I had a host of chronic multisystem conditions diagnosed and in treatment by various NHS speciality clinics). 👿 I feel very grumpy when I let myself face the fact that low dose pred probably could've begun to help me way back in my 30s. But that's water under the bridge. I know I'm very lucky to now be more fully diagnosed and receiving tip top quality care & monitoring from my stable of NHS clinics😍
Thanks for your reply...am vvv much hoping you'll keep us posted as your diagnosis progresses
I am still trying to get gp to sort out my dizzy, tinnitus and unbalanced probs.Unbalanced of body that is the mind had always had tendancy to wander.
Very interesting reading and gives me actual questions to ask ent dept as have another appointment next month.
It is so helpful the way you come up with the info and links as experience so many different symptoms and problems but don't seem to find the answers or explanations and then your posts pop up and yeay,wow that's it!
Glad you're back been real quiet while you away but hoping you had a great break
👋👌yes thanks effie😘❗️ It was a great break (thanks to my husband badger who mostly copes with my stuff pretty well). Hope the sun is shining on you there (well, not in a way that brings on reactions!)
Am so glad if sharing links like this one helps👏👏👏. Now I know more about the systemic issues underlying my stuff, I read the info on links like these with enough insight to realise that when they state this kind of trouble affects people with conditions like diabetes (as this link does)....they're sideways referring to people with other autoimmune conditions inc connective tissue disorders. Am I silly to suspect diabetes gets mentioned cause it's such a high profile thoroughly studied condition?
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Trying to get a diagnosis
9 months from SLE diagnosis and STILL no rheumatology - How do you access healthcare and rheumatology?
Does anyone have vasculitis (blood vessel damage) as complication of lupus? Been told I have it recently. Its rare but real!
