I hope you are keeping well (as much can be expected anyway). I have recently been diagnosed with FND but I wasn't so sure, I know its a very real issue and I am so sorry for all that suffer it but after doing some research and taking into account some new symptoms a query for Sjogrens has come about. I would just like to know if anyone suffers it on here (with or without FND) could it be a misdiagnosis or can it coincide with FND? I know so little about this kind of thing. I don't really want to question my GP when it could be seen on MRI or if its only found in bloods... literally clueless here. Any advice would be greatly appreciated.
Thank you
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vicky_24
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Vicky I’ll do my best because I do have Sjögren’s with neurological manifestations. I admit I’m very cynical about FND as an entity and have had bad experiences of neurologists taking my neurological symptoms of rheumatic diseases and other conditions out of context and assuming they are functional.
This point aside, my own story is on my profile so just click on my dog avatar if you wish to know more. I post often on Lupus UK and the Australian Sjögren’s communities on HealthUnlocked. You could follow both and read my posts - especially on the Aus Sjögren’s ones called Sjögren’s letters.
People with undiagnosed Sjögren’s and Lupus are all too often diagnosed with functional disorders - even more so if you’re also hypermobile or haven’t yet been diagnosed with any rheumatic disease.
The problem is that it’s increasingly easy for neurologists to diagnose FND simply because they can’t understand or identify someone’s symptoms.
At the same time it’s increasingly hard for rheumatologists to diagnose rheumatic diseases if these don’t make themselves known through the most classic symptoms with classic autoantibodies. This state of affairs is not a good combination at all.
I attach a good and recent link for you describing some of the neurological manifestations of Sjögren’s.
If you also have overlapping conditions as I do, such as Hypothyroidism, degenerative disc disease and hypermobility with small fibre neuropathy everywhere - then it really shouldn’t be necessary or acceptable for a neurologist to try and add FND or functional overlay or even pain syndrome, Fibromyalgia or ME to your list.
But a surprisingly high number of people do I’m sorry to say. So I would resist this FND diagnosis like mad if I were in your shoes - but this is just my own personal bugbear so if it feels right and you want to accept it then you must do what is best for you.
PS the only definitive test for Sjögren’s is a lip biopsy. You could print off the link I’ve attached and explain to your GP that you think you might have Sjögren’s and say that for some 25-30% it doesn’t show in the bloods. 50% of these blood negative (seronegative) people are the ones who present with neuro manifestations - often well before the classic dry eyes and mouth.
Your doctor did a good job of scaring you into silence! Don’t forget that he works for you! FND is probably true in some cases but way too many people are being diagnosed with it when the doctor does not know the answers. If you don’t feel that you can ask your doctor questions, then it’s probably time to FND a new doctor!
Has your doctor done total tests on everything else? Has your thyroid been tested, including antibodies against thyroid, like TG and TPO? Have you had other anything tested?
All ive had is MRI of head and EEG. Going to request all antibodies like ANA anti-Ro and anti-La that should give us the answer if they agree to it. Think I really need an new doc.
Think theyve called FND far too early but I acknowledge it does exist.
“Many Sjögren’s patients with devastating neuropathies have delayed diagnoses, because the blood work does not show any evidence of abnormal antibodies. The work, at John Hopkins, shows that nearly 50 percent of Sjögren’s patients with neuropathies lack these antibodies. Using the expertise of the Rheumatology Core Laboratory, John Hopkins Sjögren’s Syndrome Center, are seeking to identify novel and previously unidentified antibodies, which will provide insight into relevant mechanisms, and suggest therapeutic opportunities.”
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