Numbness,tingling limbs, memory,balance and speech,fatigue.. the list goes on.. referred to neurologist but all results r FINE! now what!!

Told that there is no central nervous system involvement - which I am very pleased about (MRI brain scan and lumbar picture came back fine)- so Neurologist referred me back to Rheumatologist - BUT - I saw him today and he has nothing much more to say other than this is Lupus and its good i havent got CNS involvement . He didn't increase or change my meds - Im on Hydroxychloroquine and Losartan for the Raynauds. He is sending me back to Neurologist for Cognitive psychometric type tests - but I didn't really understand how this is going to help my symptoms which to me are sounding like peripheral neuropathy or something like that - but they say they are not. So , is all this numbness, shaking, tremor in my hands and tingling in whole body, numb left side of face and tongue, speech problems, balance problems , memory gone mad - all just normal for Lupus?? He didn't tell me how this will get better :-(


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15 Replies

  • I suggest you check for Hughes Syndrome. MaryF x

  • Hi Mary F

    Hope you don't mind me asking - I know there is such a thing as sero neg Hughes syndrome - but how do you find out if you have it or not? I was wondering if you knew at all? Only I know this can cause neuro symptoms and I've also suffered 4 miscarriages - but I'm sero neg in everything. I've pinned my rheumy down as I've said to her there are 3 illness that cause livedo reticularis and they are RA, Lupus and APS I'm waiting to see neuro at St Thomas - I haven't got appt yet and need to chase - just want to gather as many facts as I can so as I have my facts and wits about me!! Thanking you in advance Jo

  • Yes there is such a thing as Sero Negative Hughes Syndrome, and it is supposed to be treated the same way as Hughes Syndrome! There is a forum on here for Hughes Syndrome, lots of us are on several forums, so stay on this one also for your Lupus needs as it is very good. Many of us have got sero negative Hughes, and indeed some people test positive, only to then get a negative. Professor Hughes himself talks often about a set of identical twins he looks after, they both have the fully blown disorder, one has always tested negative and the other positive: There is also plenty of paperwork around regarding it, and it also crops up in the transcript from the last Hughes Syndrome Foundation Patient's Day. Many of us end up going to London Bridge to get good care if disbelieved! MaryF


  • Thanks Mary F

    I feel, as I seem to be sero neg it could be any of those connective tissue disorders, neuro symptom can go with APS so I'm kinda on the trail atm - I've got Proffessor Hughes details and when I find out when my St Thomas appt is I'm planning on seeing if I can see prof Hughes privately on top, just to be sure and cross everything off my list, it's slow going, illness seem to be progressing. I will have a look at the Huges syndrome forum - many thanks again xxx

  • I was experiencing the same and thought the lupus was flaring but my markers remained normal.

    Following more blood tests it appeared that I had an over active thyroid which was causing tremors, memory loss, numbness, palpitations, diarrhoea, sweating, nausea, dizziness and insomnia.

    One day of new medication and I feel much better

  • I agree that you should check your thyroid levels, unless you've already done so. But also check your vit D3 levels - I'm surprised your neuro didn't suggest this because there is more and more research showing that decreased levels of vit D3 cause neuro symptoms.

    I had similar symptoms, same tests, same results as you but my symptoms went away only once I've increased the vit D3 intake per day. It is such a simple thing to address, it is worth trying.

  • hi guys but as u know lupus mimiks a lot of other disease i myself get bad tremors but not all the time thankfully my rheumy says its ms symptons but because its lupus playing tricks theres no treatment !!!! im no dr im just saying wot im told but it does make sense hope this helps

  • Hi - just had to reply to this as your symptoms sound so like mine - I get all the usual joint pains, ulcers, fatigue, hairloss livedo etc but neuro symptoms too now - I also get tremors, weak arms, numbness, the right side of my top jaw goes numb and the left side of my face drops and speech slurs, I loose my balance, suffer with tinnitus and my legs pack up - it's just as if my spinal cord has been cut as legs go with no warning - I feel the symptoms I suffer sound like peripheral neuropathy, I've noticed when I flare and my joints hurt it seems to trigger the neuro stuff so something must be getting squashed somewhere the thing is I've been given the title sero - neg connective tissue disease and I'm on the usual meds - waiting to see neuro at St Thomas but I'm just not holding my breath that they will find anything either - I need more help then I'm getting that's for sure I'm just waiting in the system for the next appointment. If these symptoms are not central n system lupus then I want to know what is causing them. I'm In a situation where no one seems to be in a hurry to help me as yet maybe cos my bloods aren't playing ball. I've done the seeing private rheumys and neuros and now linked back in to NHS and waiting for St Thomas appt. it's frustrating to say the least. I wish you luck - keep us updated x well wishes

  • Hi Jo - I'll email you if that's ok x

  • Yes that's fine xx

  • Vasculitis is common in autoimmune disease ...

    [quote=""] Vasculitis can be a part of other rheumatic diseases, mainly including systemic lupus erythematosus, rheumatoid arthritis and Sjögren's syndrome. [/quote]

    Vasculitis can affect central and peripheral nervous system, (aka "cerebral vasculitis" and "vasculitis of vasa nervorum"). There are blood tests for vasculitis.

  • Thanks everyone for your replies - much appreciated! x

  • [quote=“singlemumloopy”] (MRI brain scan and lumbar picture came back fine) [/quote]

    small-vessel vasculitis can affect brain-function without showing up on an MRI scan : small-vessel vasculitis “obliterates” some of the blood-vessels which are thinner than hair , so the damage can be below the resolution of a MRI scan , ( and may not show on angiography either ) …

    [quote=“European Journal of Neurology 2002 *, 9: 343–347”] The recognition, diagnosis and management of cerebral vasculitis: a European survey ...

    … imaging by computed tomography or magnetic resonance imaging (MRI) is likewise wholly lacking in sensitivity; angiography is of questionable use …[/quote]

    i.e. that no abnormality is seen on brain MRI does not necessarily mean "conversion disorder" ... , [ IMO I doubt such a disorder exists in anyone, it’s more likely that they have an unrecognised organic disease affecting their nervous system ].

    [ * MRI resolution has improved since 2002 but may still not be high enough to detect the presence of small-vessel disease which is sufficient to cause dysfunction ].

  • I had "glove & stocking" peripheral neuropathy, poor balance due to muscles not doing what I wanted, falling, swollen knuckles with breaking blood vessels, and hand tremors when pointing. Drs tested me for 10 mos with numerous blood tests (13 vials ea time), at least 3 nerve conduction/EMGs. Drs had no clue what it was, 1st neurologist told me to see a shrink, PCP finally told me "If you can find out what it is, let me know". Hard to type then, but I finally found (site has a new name - ?), and I asked the PCP if it was all side effects from amlodipine (Norvasc), PCP replied "that only happens rarely", but she took me off that rx anyway and that fixed it. Fyi, it still took 3 more yrs to find a physical therapist to treat me "like a patient who had had Guillain-Barre" and to re-enervate the knee and shoulder muscles with a TENS unit, lots of joint problems in the meantime. Hope this helps.

  • I have the same symptoms

    Can we private email chat?

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