Neuropsychiatric lupus?

[Amakura]

Hi there

**If the following doesn't make sense, please let me know**

Feeling poorly for a while. I posted a while ago about a muscle spasm within my hand, which turned out to be a swan-neck deformity but have experienced subsequent hand spasms, weakness, tremors, eye to hand coordination is off, head and arm twitches, and oddly, stabbing pains within the right side. By the way, all of this happens on and off on my dominant side.

I've been referred to Neurology but their appointment list has been put on hold. No new appointments are being booked for obvious reasons (post pandemic backlog).

Is this lupus neuro-related? Have you experienced similar before? How did you cope - as I find it difficult to hold cups, open bottles, bathe, walk - when the episodes start?

P.S I've been to A&E, who identified the tremors, coordination, off balance etc. I had the standard (non specific lupus) blood tests and all were normal.

Thanking you in advance.

x

[MrsMarigold]

Hi Amakura. This is a situation that needs more information: your age, any recent falls? Accidents you may have thought innocent? Physically over doing it? Does it subside with rest? How long have these new symptoms been active? Are you very anxious or worried about something?

I could ask many more questions but I think you have already had to answer them at a&e.

I have lupus and I have a spine condition that has similar symptoms. I’m in US. Neurology is trying to sort out why my symptoms are so strong; like walking 3/4 of a mile and it’s a waterfall effect of weakness from my head to toes and I struggle to get home. It’s not MS.

What you describe sounds neurological but it may be totally unrelated to lupus. I was told the nerve damage in my cervical spine and lupus “play off” of each other. I know this is true in heat and humidity which I avoid at all costs.

The worst part is the unknown. I cope with my disabilities best when I have vocabulary for it; it is good scientific evaluation; I trust my doctors and they trust me in turn to make as wise choices as I can—-and I have a plan. As I await more testing I sense a new plan. I’m okay with adjustments in my plan.

( just give me silk and cashmere and I’m more than okay! Lol). Plz message if you have more questions. I’m sorry your wait for the next appointment is long. MrsMarigold

[jilk]

chasing a diagnosis is frustrating, i found it more useful googling people who successfully found cures fir themselves while still following the medicine model. e g dr wahl with ms (minding the mitrochondra). peterson and the lion diet for arthritis. success stories for vegans and also carnivores. I focus on diet put the wrong fuel in your car, it does not work. 90% health is the best I can get

[KayHimm]

Hi Amakura -

Your symptoms sound concerning and yes, the neurologist will surely put lupus high on the list. The neurological issues do not always correspond to lupus activity. I believe I read that. The lupus cerebritis with change in consciousness, intense pain, fever does correspond. That is very rare.

I have lots of mild symptoms which I call my weird head. I do remember reporting jerking movements with arm. Yes, the neurologist was concerned, though thought it might have been the normal type you get falling asleep. Any tremors, weakness and balance issues are significant.

I predict you will have an MRI but that won’t show everything. The neurologist will try to determine the likely mechanism that is causing your symptoms. Unfortunately, though this area is being studied intense, the exact mechanism of lupus brain disease is not known. They think there is both direct attack on neurons, inflammation and also micro clotting. I only mention this because the neurologist has to try to understand what is happening in you - if it is lupus-related - and target the treatment.

Do you know if you have anti-phospholipid antibodies? These are the APS antibodies. Those cause problem through tiny clots and patients feel symptoms from the blood being sticky. They can help by medication like aspirin or more powerful blood thinners.

What medications are you on now? Maybe doses will be added or new medications added.

I feel awful that you won’t be seeing a neurologist for a long time. Your symptoms are troubling.

I hope others can give you tips on coping with these symptoms. My symptoms are a bit different so I am not able to be as helpful as I would like.

Check in often.

XX Kay