Has anybody with SLE had experiences of freaky diagnoses from neurology departments - only to have things return to just the mild horror from lupus related cerebral and nervous system involvement ? I just got bounced from somatisisation to complete and utter disease exoticism.
Many years ago one neurologist declared that I had Crutzfeldt Jakobs disease and I thought I was going to die pretty quickly. (It was B12 deficiency).
Now today - I've been confronted by a freaky MRI radiology review that suggests that - 'in the setting of systemic lupus the possibility of NMO spectrum disorder is raised'. This illness is so utterly rare - I'd have more chance of being abducted by tiny purple aliens who then buy me a winning lottery ticket. Among other lovely things - It causes blindness and paraplegia along with loss of bladder and bowel control.
Please forgive me in advance if I'm slow - or can't respond to reply's - today my Rheumatologist rang and told me my optic nerves are in a zig zag pattern. Seeing and writing is quite difficult. (They're going to have a 'House' like conference soon to see what they think (?) is going on.
Hopefully not this NMO thingi.
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Freckle1000
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I had my rheumy tell me that lupus was attacking my kidneys and I needed to start methoxotrate. my renal doc said otherwise and when I got rheumy to check my last bloods she then said I was in remission. I do wish they wouldn't base treatment on 6 month old blood tests.
That's absolutely astonishing 😳. You've got to wonder what's going on in their minds. Ive had a lot of mistakes happen with pathology. Usually in the egnored category. It's one of those issues that you just don't expect to happen - but it does. I get all my pathology results sent to me - and over the years I've done my best to learn what they all mean - although doing this can be pretty torturous - many fights and wrong conclusions - but at least it keep a the Doctors on their toes.
Uh 😬 - unfortunately she based the optic nerve stuff on fact. My sight is OK but its like I cant quite find the right glasses. She's had a look at an advanced MRI image with contrast. ( we have a very posh machine in Melbourne (Vic/Oz) I think she meant the optic nerves that connect to the brain. There's no doubt my brain is in a bit of trouble - there may be a bit too much fluid up there too - its just - as you say - the rareified academic - shut in - over itellectuallized - covid - daze with projection issues that may have lead the radiologist ( an associate proffessor) - who's into obscure research 🙄 to come to this conclusion. The machine attracts these types.
At least this has what I'm hoping.
The Rheumy is actually on my side with doubting this diagnosis. ( unless she was just trying to make me feel better ? ) Its all within a hopital system. Her comment being ' I don't know this radiologist ' - so I'm organising a meeting with him and others to see what (other) conclusions we can make.
I'm just so exhausted - and traumatized from all the complexity - not just from the illness - but the Doctors themselves.
Hi Misty - I hoped you'd pop in and say hello. Thankyou so much for you're lovely reply. It's great to know you're always there. Sending you a big, slightly blurry, slightly wobbly - virtual hug.
Thinking of you patiently waiting to get you're own medical help over there.
Im thinking of you lots freckle. Hoping you can be helped and not frightened with rare illnesses. Our immune systems can play such horrid tricks. Keep me posted as and when you can. My parents are having their jabs this week so thats lifted our spirits. At least i know ill be next whenever it is!. My U.S pen pal has recovered from covid thankfully too.
It's nice to hear some good news from over there at last. I'm also so glad you're pen pal made it through this covid horror. I'll be sure to keep you updated when I know more about this neurological problem.
My main battle at the moment is getting a fast referral to see an appropriate neurologist. Doctors are still snowed under with shutdown backlog.
Today I had a medical advocate - tear a large hole through my local GP clinic today on my behalf. 😁😁😁 It was so cathartic to hear about it. - She's fast developed a laser focus on the receptionist that has been so obstructive in the past - and is continuing the tradition now - slowing things down because - quote from the advocate recalling the coversation - ' it's only Kerryn '. - as in - I'm not worthy of her or anybody's attention. It's just abject contempt.
I saw my GP on Monday regarding the MRI. He put me in an urgent referral category - and asked me to try and get an appointment with a specialist Neuro already picked out for me this week - and to get back to him if this couldn't be done as he would make sure this would happen.
My advocate was sitting next to me in this appointment, but more importantly, this receptionist didn't know this. ( on that say we came in the back entrance due to covid classifications )
When I couldn't get the Neuro appointment this week - I attempted to get that message back to my GP via his receptionist. She didn't listen - or pass on the message. When my advocate spoke to her she repeating the same urgent message to be passed on she received the same snooty treatment. To cut a long story short - she caught her out lying and being purposely obstructive - the receptionist not realising the advocate had been at the appointment with me. Apparently the advocate did a bit of yelling. It's probable I should have started yelling years ago myself.
This advocate is a legalistic, date, time and comment recording, heat seeking missile of a social worker. She notes the time messages were meant be sent on etc. Absolutely - meticulous and fearless - given this is her GP practice too. We'll both be seeing my GP again next Monday.
It will be interesting to see what happens. There may be a small victory there ?
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I can see the power of an objective witness - not only for me - but as a very practical strategy for all of us.
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Physically I'm only just holding up - loosing my balance a little bit - my extreme left field of vision is becoming a bit like tv static. But I believe my Rheumy will also be pushing for a fast referral tommow - despite her accusing me of having fibro🤦♀️
Dear freckle, im so sorry your having to go thru this horror once more specially as your so poorly!. You must be so worried at your symptoms!.
Thank goodness as you say, you have this fantastic patient advocate and she' s doing such a good job. Definitely a role needed as once your on the wrong side of a doctor's receptionist it can be impossible, they carry such weight!. Yours should be reported for that!.
Important is to get you that neuro referral pronto. Will be sending you lots of thoughtwaves for monday and hoping you are achieving it.
Keep safe and TAKE CARE. Xx🤞❣🧏♀️🤞❣🧏♀️🤞❣🧏♀️🤞❣🧏♀️🤞❣🧏♀️
My bloods tell me I'm in total remission and in glowing health - and I reduced meds accordingly. Now look what's happening to my brain. New damage and unwanted fluid up there. I get the impression the brain and the rest of the body are meant to be two different - separate systems - unless the blood brain barrier is a bit wonky.
Thankyou for the link Sue_petal. It was the exact same article I went to when I read the MRI results. The may clinic is a great resource. Unfortunately this thing is all too real and its possible I do have it.
It's just so rare and I'm hoping just for plain - good old fashioned Neuro lupus.
From the little reading I've done NMO is seen as distinct from MS now - but this seems a rather recent conclusion. Its believed to have a distinct marker MNO- IgG, (?) with others suspected. It also seems to attack the brain and spine in a different pattern.
The way the disease unfolds is seen as distinct enough too.
Thankyou for those links ! - I'll have a good read and get back to you.
I haven't had any patholgy tests done in relation to this yet - but I already know about demyelenisation from pernicious anaemia. One of my first questions to my GP on Monday will be - am I having trouble with metabolisizing b12. I've had regular injections for years - but my GP has been screwing his face up and grunting at my B12 pathology levels post injection like there might be something amis - as in too much floating around in the blood stream ?
I gave my Rheumy a copy of the ' But you don't look sick' research paper by Melanie Sloan. She didn't take it well........and quite instantly diagnosed the pain I was suffering as fibromyalgia. I thought - wow......what a reaction.
I told her that I don't like fibromyalgia - its lead to delays in diagnosis. Her terse reply was 'I know you don't'.
I wont bag this particular specialist too much as she ordered the MRI and has organized a quick referral to a good neurologist and may just have saved my life - but they are very set in their education and ideas about somatisization.
I agree rheumy's tend to look for lupus with superficial signs like rash and arthritis - whereas people with the internal organ attacking type of SLE go undertreated underestimated. I've looked at one or two lectures and Doctror educational videos regarding lupus and they tend not to concentrate on serious SLE - there's a general assumption that its all rashes and arthritis.
I also get more value out of nephrologists no nonsense attitude.
I really think its time we pushed for an 'actual' genuine lupus specialist category free of other disciplines and their academic axes to grind - if not for us - then for future generations.
Thankyou so much for sharing those articles. They're excellent.
It really does look like there's still a lot of confusion as the whether NMO is a definitive illness - or perhaps - an illness in development. There does seem to be a lot of overlap with other conditions - as you said.
Looks like I do qualify for quite a few of the criteria. Swelling of optic nerves, mild neuro edema - a lesion adjacent to the appropriate thingimibobs they're talking about.
Many moons ago I was told my nerves leading to my stomach and heart had been damaged at the dorsal root ganglia by a lupus flare causing digestion and heart rate problems - (POTs) / autonomic dysfunction. Now I think its possible its spinal involvement form this NMO business.
Freckle, my cognitive problems have gotten to the point where I have trouble reading and writing. I'm still pretty good at conversing although I do have problems at times getting common nouns out. A new rheumy just started me on Adderall, so we will see how this goes.
I had look into NMO myself because an early symptom of lupus-like UCTD was waking up from a nap in a very hot bedroom blind. (Everything was white.) I was so hot the first thing I though of was cooling off. Fortunately, as I cooled off in another room my sight came back. I had just moved to NYC, didn't have a doctor, and bad health insurance, wasn't diagnosed, so there was no followup. I kept having odd neuro symptoms often brought on by heat (a MS symptom). So when I found a good GP, he sent me for a big neuro work up. The neurologist told me I had MS, but then the spinal tap came back normal, you know the rest fibro, hysteria and the disgust of the doctor. Very distressing. However, after accruing more lupus symptoms I was sent by the same GP to a forward thinking rheumatologist who despite my meager positive tests, put me on plaqunil which helped very much with symptoms, flares, fever.
The blindness episode lasted maybe 15 minutes and never came back. I believe I've had the blood tests for NMO which were negative. That happened after my first serious flare in years which landed me in an epilepsy ward after a seizure in the ER. (My antibody tests which were many, but didn't include APS, were negative. And they somehow ignored high SED rate, CPR and severe lactic acidosis.) Unfortunately, I was in a NYC hospital with neurologists under the spell of "everything we don't understand is somatization" although I did hear a lot of fighting between doctors in the hallways, and one of the doctors showed me seizures on the EEG.
That was the one and only seizure episode. I had to find all new doctors at a rheumatogy center in NYC (HSS). And no, UCTD. Later APS. But GPs closer to home still confused by not many autoanitbodies. Now I have low Immunoglobulin G, low leukocytes, and the low natural killer cells that I had prior to lastest autoimmune episodes.
Just in case, anyone has read me before my latest illness which I'm still trying to figure out, I had sepsis with delerium and encephalopathy. Fortunately, (cytokine storm?) that cleared up with time and prednisone. I have may have written some things here while was still having delerium. I don't remember much from that time except some of the delusions and hallucinations that were incredibly vivid. Any way sorry for that, and some people had sent messages to me that I couldn't answer (including you Freckle. Thanks and sorry. And sorry that you are going through BS again.)
I'm also sorry for the long reply. I can't believe I wrote that much, but the fog is descending and I can go back and edit.
Please don't apologise for anything you say - everything is helpful - especially when any of us have the courage to talk about whats a bit of a taboo subject - how the immune system effects the brain and how much discrimination and diagnostic overshadowing occurs with it.......and the inevitable fibro diagnosis. Neuro involvement just makes us so vaulnerable to whatever whim's the medical system throws at us - no doubt about it. I don't know wether were just too easy to fob off because of our disabilities- or wether its bullying / projection.
You're experiences have been utterly horrific and unacceptable - but for me its a comfort hear from you as someone who's gone through similar horrors. It makes me feel less alone right now.
Today I was literally staggering around - loosing some balance finding that I can't multitask on the most basic level. Its like just waiting for my neurons to squish. I too am seeing things that aren't quite there - just blips and shadows. My autonomic function also deteriorates in the heat. ( summer here)
I started to raise the alarm when my BP just spiked and kept going up. I knew something was very wrong - but with my first visit to my GP - he told me the spike was a ' subconscious manifestation of having a bad Christmas 'I actually found this one funny enough to let slide - but as the BP just kept going up - and I found I couldn't get past his receptionist to get help things became more serious. All inflammatory markers were negative. I'm in SLE remission.
I believe the brain and the rest of the body are different eco systems ? But I've heard of dodgy blood brain barriers in lupus.
Today I was able to show him my MRI results and it was a perverse joy to see him panic and franticly try to speed up my Neurology referral.
Part of the conclusion to the MRI report states the possibility of intercranial hypertension - with no detectable pathology causing it.
I do feel like my skull is going to pop -
I have been wondering about sero negative dips before a flare. Stuff Ive googled. Is this what you think is about to happening to you now ?
I'm really hoping she will be this time. It's one thing to be just overwealmed or not good at their job - its another when they show a consistent pattern of contempt towards the most vaulnerable patients that cross their path. Its really quite manipulative and psychopathic.
She's also very good at ingraciating herself with the Doctors. I had a telehealth appointment with another GP in the practice to try and get the message to my regular GP. Somehow ( Joy ) the receptionist found out and this other GP didn't call me at all. When I rang after this appointment about an hour layer - the GP responded - ' well I saw the appointment there - but you know.....' I didn't know...... my advocate had layed into Joy at this point - but Joy managed to very quickly stymie this appointment on me. The ultimate indignity was having to ring through via her to speak to the non responsive GP. She was so happy to put me through.
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