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LUPUS UK
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Tremors, twitching, neurological symptoms

I am officially diagnosed as uctd, but it is called lupus and sjogrens. I have an ana of 1/1280 and a positive anti ro. It's been fairly stable, I also have thyrotoxicosis caused by a large nodule on my thyroid. It's not gravestone, not related to the autoimmune but it's unstable and I'm frequently hyper or hypo.

But over the last year of so I've been getting some neurological symptoms, constant eye twitching in both eyes at once but worse in the left, facial twitching, lips, tongue, thumb and forefinger on both hands, thighs. Tremors, which I blamed on my thyroid but it's mainly on my left side, with increasing weakness in my grip, intention tremor, just in that hand, problems reading, mixing up letters and words reading and writing, like writing p instead of d. Problems talking sometimes. And worst of all quite a severe head ache, like an ice pick driving from the Base of my skull into my eye, and down my spine. This along with urinary frequency and urgency and bowel changes, very very dry eyes, and muscle pain/weakness. I'm worried. My twitching can be not too bad some day and terrible on others with my lips and eyes going at once.

My hand issues make it hard to pick up small objects. Can this be lupus/uctd/sjogrens? I'm not on meds right now. I was OK handling the pain with mindfulness and taking mild pain relief when needed, I didn't want hydroxy while breastfeeding. I'm worried this is something else (God forbid) I had nerve conduction studies recently for tingling and numbness in my hands and feet and everything was fine. I don't know what to think, I'm worried about Ms and other nervous system diseases, but then it seems just ridiculously unlikely to have that too..

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Hello Kangamum,

So where are you now re treatment? If you have been off meds for some time, then wouldn't it be more likely that your symptoms are due to whatever conditions you were taking meds for - rather than something completely new?

Other than that, I guess a big difficulty is that systemic autoimmune disease seems to be able to produce any and every symptom under the sun! There are several people on this forum with much more understanding of the neurological effects of AI conditions, but as you know, only a medic who knows your whole clinical picture is going to be able to answer all your questions (if you are lucky!)

Hope it resolves soon x

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I'm only on my anti thyroid meds for the thyrotoxicosis. I haven't been on hydroxy in about 2 years as I've been generally stable. I was on it for about 2 years before that. But In the 15 of so years I've been ill with my ai, my flares have not seriously progressed at all, just the same stuff, periods of remission, same, so this seems different than my usual ai. Or I've just been lucky up til now with the progression. I wasnt sure how lupus/uctd could affect the brain or cns. I guess trying to see my rheumy is important, but getting an appointment is unlikely

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Hi Kanga mum,

Get yourself to your primary specialist/neurologist very quickly. I'm not strong on maths or the translation of pathology results but that ANA titre seems 'very' high and shows you need to get yourself back on a reasonable level of imuno suppression. SLE can cause neurological damage - so - make sure you get on the correct medications to dampen down the Lupus so your nervous system is protected. Don't mess about. Get some preventative medicine now.

My ANA's is around the 600 mark - for my SLE that's considered - under control. These are Australian numbers. The British system may be different.

If your Rhuematologist does nothing with 'what I interpret as' a high level of inflammation he's a waste of space. Find another specialist. Make sure you get a neurology referral just to be on the safe side.

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Hi there. Have you seen a rheumatologist or GP about these neuro symptoms yet to get a referral to neurologist?

If not this is what I would do ASAP.

I have most of the symptoms you describe and have Sjögren’s and Hypothyroidism.

Your blood work, including high ANA reading, suggest Sjögren’s to be your main systemic disease and it can cause peripheral and central nervous system involvement similar to Lupus so this really needs addressing as soon as possible - especially as you are currently unmedicated. This link might help.

hopkinssjogrens.org/disease...

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My ANA was 1:1280 also.My DX is subcutate Lupus, and maybe Discoid (I don't think so though)..affects mostly skin, joints and FATIGUE....I do get strange vision..like I can not focus properly ,and feel as if I am in a fun house with those wacky mirrors..I also noticed yesterday that my hand had a tremor in certain positions....I see that you are nursing(congratulations on your baby!)I understand not wanting to take medication, but perhaps a good serious talk with you Dr is in order. I can't imagine having a bad flare and having to take care of an infant..My Best and I hope you get this resolved quickly

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I haven't been to the doctor about these symptoms. My last rheumy appointment I told her about the tingling and numbness, the twitching, weakness and tremor I had associated with the thyroid. Obviously considering it has yet to go away, I'm guessing it's not. I have put off going back to my gp or trying to get an appointment with my rheumy because they just fob me off. Even with my ana and anti ro I am told that it's fine, it won't get worse. And "lots of people have a positive ana". With my ongoing and worsening symptoms I have been trying to live in denial. But I will go to the gp this week, so thanks for everyone's help encouraging me to go back. I plan on trying cbd hemp oil, I've read great things about using that and tremors. But obviously I should see someone before I do that. My baby is older now so meds are a possibility.

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