Electric shock pain

[Persiankiwi]

Has anyone had a nerve conduction test thatt showed up in the test. I have neuropathy in 24+ areas & it's getting worse & more frequent ( 18 months now) sometimes lasting 5 hours. I've seen two neurologists in Brisbane but both times showed nothing. Last one at Prof Corbetts rooms. It's really getting me down now. I've tried pregabalin & the likes but get horrible side effects. Hoping someone might have an answer. Plus I'm also loosing heaps of hair at every wash & a different rash every 10 days also getting me down as itch makes me cry.

[weathervane]

Im sorry to hear you are feeling so poorly . Im not sure i have any advice. Did you ever get the lip biopsy done , also did you get vit B 12 checked? I hope your doctors can help and find a way forward for you . Sending you lots of good thoughts 💐💐💐

[Persiankiwi in reply to weathervane]

I have appointment next Friday with rheumatologist so thought I'd let him decide but from what I've read it can take a while to show up in bloods and lip. I have immunologist appointment too but not till May.

I need to get to bottom of it as really need a job but am so tired of being tired, not really tired but exhausted and my brain fog seems to be getting worse ( so my teenagers tell me). B12 vitamin d etc all good.

How are you doing ?

Karen

[stringstudio]

Yes , I had NCS for cubical tunnel and for meralgia parasthetica . Both positive but they cannot offer any help anyway. I take 5 mg Endep daily which helps for some other referred nerve pain I have in nether regions . Can't take any more as it worsens the dry mouth. We go through it , don't we?

[Hidden]

I have had this type of pain for about six years. It started around the time that bilateral joint pain started. I was (mis)diagnosed with RA but it turned out that I have Sjögren's instead rather than RA.

Mine hasn't shown up in nerve conduction studies at all but my neurologist is quite happy to call it small fibre neuropathy (SFN) - which would apparently only show up in skin biopsies rather than nerve conduction studies.

I do have a positive ANA and paired bands in my spinal fluid - but not the more specific markers for Sjögren's so I was given a lip biopsy which was 100% positive last year. They think I have primary SS but not fully decided yet. I don't take any pain meds for my SFN as too allergic to the ones I tried -but I am on an immunesuppressant called Mycophenolate. Not yet sure if it's helping.

My finger tips are really bad just now with prickling and itching like stinging nettles or minor burns and strangely shiny pitted skin. I think this is probably from secondary Raynauds as it's still wintertime here in Scotland.

I'm also being assessed for Scleroderma but hopefully I don't have this as well.

hopkinssjogrens.org/disease...