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LUPUS UK
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It never rains it pours

Happy new year to you all. It's been a wonderful start for me I must say and I'm feeling very sorry for myself.

After a fairly long period of relatively good health and feeling not too bad, I've been hit with 2 new problems.

First I get diagnosed with optic neuropathy. The nerve is ' pallor and inflamed ' and the myelin sheath is affected. Apart from MS I'm told lupus can do this but not sjogrens. I've had blood tests and am to have hourly monitoring for pressure spiking and then aftet my next appt and depending on results will be sent to a neuro optho. I knew something was wrong last year when I lost low vision in one eye but it kept being put down to hydroxy which I continually argued against. I was proven right again. It isnt the hydroxy.

It comes and goes as sometimes my vision isn't too bad but at others I can't see a thing but blurry squiggly lines and the eye pain is unbearable.

Does anyone else here have optic nerve damage?

Secondly I had a recall from my breast screening centre after my routine mammogram. I had small calcium deposits which needed to be biopsied. After a very painful afternoon they were unable to get these tiny calcium spots so I'm to have another biopsy in a couple of weeks.

I know this isn't sjogrens related but I was wondering if it could be aided by the immune suppressants? Any thoughts anyone?

Happy new year to me 🙁😔😢

Things can only get better, can't they?

Oh no, tummy is starting to flair.

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I’m so sorry that you are going through all of this. Please ask to be checked for Neuro myelitis Optica. Push for an NMO antibody test. I will pray that your biopsy turns out well! Keep us updated!!!

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Thank you blessed. Funnily enough I did think of NMO and was going to make an appointment with my GP to see if she can do the test as my next rheumy appt isn't until March. Will make an appt for next week. It does sound like a possibility as I suffer with my spine too and have lots of MS type symptoms. Honestly, it's always something with us poor autoimmunees isn't it?

Thanks again for the advice.

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Oh no poor you Georgie - no wonder you’re feeling sorry for yourself I would too!

I can’t comment on the breast calcium lumps but I can say that your ophthalmologist or rheumatologist are wrong about optic neuritis not affecting Sjögren’s sufferers. Here is Julius Birnbaum of the John Hopkins university on neuro manifestations of Sjögren’s. I do wish our doctors would do their reading on our disease;

“Patients with Sjögren’s syndrome may have another autoimmune disorder called “Devic’s syndrome,” or “Neuromyelitis Optica.” Neuromyelitis Optica (NMO) causes inflammation of the nerves connecting the eye to the brain, or “optic neuritis,” as well as myelitis. The pattern of myelitis which can occur in Neuromyelitis Optica is much different than Multiple Sclerosis. Typically, the myelitis in Neuromyelitis Optica is more severe, causing severe weakness, and may cause future relapses.

Again, the treatment for Neuromyelitis Optica is much different than MS. Patients with Sjögren’s syndrome, who are diagnosed with MS, need to be skeptical about receiving these dual diagnoses. Below, I offer some helpful hints, which may especially cast doubt on the diagnosis of MS.”

hopkinssjogrens.org/disease...

I think CuttySark has had this so it may be worth asking her about it.

Best of luck with the breast biopsy and results and hope your just going to get off to a better start to 2018 a bit belatedly Xx

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Thanks so much twitchy. As usual a very helpful and informative reply and you've made me feel loads better. When the eye clinic told me it wasn't sjogrens related I must admit I worried thinking what the hell is wrong then? I don't see my rheumy till March so it'll be interesting to hear what he has to say.

Apart from the usual blurred vision, real problems started in my eyes a couple of years back but nothing had been found till now. I have various regular tests, macular scans, etc and it was always put down to hydroxy. I knew it wasn't and refused to stop it. I've now just had blood tests for syphilis, alcohol dependency, hiv, and all manner of infections they say are responsible for optic neuropathy. I did wonder what the phlebotomist was thinking while drawing blood. 😲

I have had MS ruled out. Once at the start of this illness and again last year so I'm not at all concerned about that. NMO is definately worth considering though. My spinal canal isn't as wide as it should be and the cord is slightly compromised so I don't know if that's anything to go by?

I'm so loving this article, thank you so much twitchy. I'm going to be doing lots of reading today while I can see quite well.

Hope the new year has got off to a good start for you and all your visitors have left you in peace now. Take it easy X

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“I know this isn't sjogrens related but I was wondering if it could be aided by the immune suppressants? Any thoughts anyone?”

Wrong Georgie - it very much is Sjögren’s related - Dr Price has SS patients who were misdiagnosed with MS due to this - please print off and show your Dr the Julius Birnbaum piece as he’s the world expert! X

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One question. If I don't have the spinal inflammation, therefore no NMO, can the optic neuropathy alone be sjogrens related?

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I think so but this is a question you could only really ask of a Sjögren’s expert such as Dr Price or Bowman or the John Hopkins team. It’s so specialist that the UK rheumies are still in the dark ages with the neurological manifestations of Sjögren’s I’m sorry to say. X

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Oh I completely and totally agree. I'm constantly told by various doctors that something is not sjogrens related or nothing to do with autoimmunity and when I say I have read it on a very reputable website, I'm told I'm a hyperchondriac and should stop googling things. Grrrrr so frustrating. Thank you so much for your help though. X

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Your problem is that you are being too honest re googling and admitting to being an expert patient! I know this only because it has been my problem too! Now I’m just starting to grasp the art of appealing to them by stealth - saying stuff like “I don’t know if the thing that makes me dizzy and faint is because I have high blood pressure (?!!) or my hearing loss and tinnitus in both ears perhaps? or could it be that my feet and face are increasingly numb so my Pro..Pro..pro (what’s that thing with nerve signals???) .. ah yes thanks that’s it...my proprioception is so messed up?”. Feigning ignorance has been the toughest skill I’ve had to acquire since all this malarkey started. But it’s a necessary part of the chronic armoury I’m sorry to admit! 🤷🏼‍♀️ Xx

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Hahaha good old twitchy. You seem to have it all wrapped up. I love the way you explained it. Made me chuckle. I will definitely try that approach next time. X

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Could just be optic neuritis? Or optic neuropathy perhaps - which I think is what I may have ever since a flame haemorrhage was detected by one of my optic nerves same year as I was found to have paired oligloclonal bands and white matter of brain - all fit with Sjögren’s my neuro and rheumy explained.

“On the other hand, NMO-IgG was also detectable in the serum of patients with disorders related to NMO, as recurrent myelitis with longitudinally extensive spinal cord lesions, recurrent isolated optic neuritis, myelitis or optic neuritis in the context of certain organ- specific diseases as Sjögren syndrome (SS) or systemic lupus erythematosus (SLE), sarcoidosis, Behçet disease, and non-organ-specific autoimmune diseases (antinuclear antibody, extractable nuclear antigen) which were named the spectrum of neuromyelitis optica (NMOSD), and also in Asian optic-spinal MS9,10,11,12. The percentage of patients fulfilling the diagnostic of NMOSD is low (1-2%) in white people from Europe, North America, or Australia and high (20-48%) in people from West Indies and Asia12,13,14....”

scielo.br/pdf/anp/v72n8/000...

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Thanks twitchy, that looks really interesting and helpful. I'll have a good read of it later on. Thank you X

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I haven't any experience, or information, but I can send a hug x

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Thank you lupi X

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So sorry georgiegirl your battling with two serious new problems!. Not the best start to a new year. I do hope you get good news from the biopsy and helpful treatment for your eyes!. Very worrying for you. All the best and keep us posted. X

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Thank you misty X

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Sorry to hear you’ve got this to deal with and really hope you get some understanding and treatment for the eyes and that the biopsy is ok.

Great advice from twitchy about guiding them to what we already know from research and pretending not to be an expert patient!! I will try that too next time...

X

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Thank you melba and I hope the plan works well for you. Please keep us posted.

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