Hello
Have not been on this for a while now.
Just wondering if anyone could relate.
So I was gardening a few weeks ago and after it I got tremors in my hand wouldn’t stop for a bout ten minutes.
I filmed it as I’m still waiting to see rheumatologist as undiagnosed.
Also my lip has been like trembling all day you know like when your eye does ?
Does anyone experience any of these ?
Thanks for any help and I hope everyone is keeping well .
Natalie
That was really smart to get a video of the tremors. I do get weird leg jerks. The neurologist is not sure what they are.
Movement disorders do occur in autoimmune diseases so the rheumatologist will have to evaluate and make a decision about referral to neurologist.
Do you have other neurological symptoms?
K
Hi thanks for that .
I do have some dizziness and balance issues. Had to stop running years ago now 😢 as I was extremely fatigued and the dizziness was crazy same as the balance.
I have tinnitus I’ve been to ENT I’ve had an MRI and everything was okay .
I also have kyphosis of the spine.
I also get trapped nerves in my arm so uncomfortable 😣
I’m just panicking but if it was serious then it would of got worse by now x
Thanks for replying ❤️
Sounds like you have had some very hard symptoms. You should report all of these to the rheumatologist.
That is good news about MRI. Try to focus on that. Some of these symptoms could be related and others not. Best to bullet them and let the rheumatologist focus on those that are relevant. Just a guess but the spine issues are unlike to be autoimmune related. The fatigue is non-specific but definitely a common feature. The dizziness is a really tough one - many of us have it even the exact cause is unclear.
Record your temperature, note rashes, joint symptoms, muscle aches, hair loss, reactions to the sun, and any other unusual things you experience.
Xk
Hi
Thanks lovely
Yes my spine is due to have Cushing’s syndrome about sixteen years ago now .
I get the rash sometimes but not always could be once twice a month etc .
I don’t go out much and haven’t noticed much regarding the sun although certain lights make me warm and bring the rash out like in coffe shops .
Also temperature is always okay .
I do get joint pain in my left toes no hair loss raynauds as soon as the weather changes !
So annoying the lips now I’m starting to get anxious really hate this I have goggled things now I’m worried 😦 x
Hard not to google but whatever you read probably doesn’t apply to you. 😅 What did you read? If you read about serious lupus neurological involvement, it usually happens with fever and active flare. Those symptoms are very uncommon. I heard that from my neurologist. Hope you feel better.
Best to tell your doctors what you google. That way they can allay fears.
Fellow googler here
Xk
😣🙏😌 don’t google 😂 Kay will tell you I’m a nightmare for it xx
Not a nightmare! We do have to convince you not to believe Dr. Google in every situation. 😅
My cousin’s daughter does have MS. That is another example of how Google would be of little help. She needed expertise and time.
How are you?
Fellow googler,
😍k
Sorry to hear that kayhimm however it is a much better time for ms.
I can recommend a good neurologist in London who is in touch with all new treatments for ms anything I can help with just ask I’ve lived and breathed ms for as long as I can remember.
You know I’m still not confident I don’t have it how was she diagnosed in c the end xx
Thanks for the positivity, Jade. She actually lives in the US. She had an abnormal MRI that showed significant changes after an optometrist noticed possible optic neuritis. The neuro ophthalmologist confirmed optic neuritis and they blasted her twice with IV steroids. Recent spinal tap confirmed MS.
They are meeting with the neurologist to go over treatment.
Xk
Ah more straight forward then myself ! Bless her heart well as I say
Exercise is massively important in ms you don’t use it you loose it
Vit d is a massive importance (my friend has ms and takes 10000 a day)you wouldn’t know she had it !
Also any children ask gp for high dose for the children also I think it half’s the chance of them getting it.
Cbd is good
Ocuvenus treatment (not sure how it’s spelt) has good effect
Stress is a massive trigger !
You may no all this already but just incase xxx
No, I didn’t know all of this. Thank you! Will pass this on. She does have a daughter.
I think females in all autoimmune are more at risk I think it’s recommended 1000 a day for a child ! Don’t quote me ! But I know it seemed a lot at the time !
But I know my friend dose all of the above and you wouldn’t know she had it honestly !
I wish my mum listen she went the other way unfortunately through caution to the wind 😅 thats the polite way of putting it !
How are you anyway in yourself xx
Doing well, thanks. How are you?
Yeah okay mentally which I think helps a lot !
Still the same tbh physically
Good and bad I defo flare and then I’m okay 🧘♀️ it is what it is
Just thankful I haven’t got as bad as I first thought 💭
But to be fair I gave myself 6months 😂😂😂
Just not worried as much
Next week who knows 😆❤️
Glad you haven’t progressed. Seriously, I know with this neuro stuff, that is what they watch for.
You are correct that you are far more complicated than J. I have a feeling they knew it was with NMO or MS and waiting to be to diagnose.
Well I may have I haven’t had a brain scan because of covid but I don’t feel as if I had maybe though because of the optic neuritis I have who knows ! Il just wait for the scan and take it from there !
Il be much happier if I haven’t progressed in two years September xx
Hope not. Is the azathioprine for the optic neuritis or other symptoms? Is Dr Kidd prescribing it or the MS doctor?
Ms doctor wants me to start mex something or other for neuro sarcoidosis
And dr Kidd the neuro sarcoidosis specialist wants me to start azathioprine for uctd jades syndrome 😳💆♀️🤪 I had steroids from the ms doc for the optic neuritis issues ..
Dr Kidd was very unhappy about it 😂 and refused to look in my eyes at my appointment 🤨😌 xxx
Oh, it has to be such a burden to have these differing opinions. Did he say why he didn’t want to look in your eyes?
I don’t know much about optic neuritis except that my cousin’s daughter got very high doses through IV.
Yes it would normally be
The ms doctor noted that it had got worse .. since he last see me.
No dr Kidd didn’t he said sitting in his chair follow my finger .. he only went in one direction .. 🤦🏼♀️
My mum had a good few bouts of it not really sure anymore I’m sick of fighting them tbh dx
P.s it’s made it better but I think the damage is done or the steroids are not strong enough xx
You might want to ask Dr. Kidd why he was opposed to the steroids and why he is treating the optic neuritis. He will have an explanation.
He didn’t the ms nurse did xxx
I know doctor has reassured me that it’s normal.
I have had an MRI all was fine .
I have always wonderd if I had MS but I don’t have any pain it’s just the balance issues, dizziness and the other symptoms like raynauds, my hands swell when it’s warm like today and when it’s cold they are so numb and stiff and turn purple.
My left eyelid is swollen.
Sometimes get trapped nerves and pain in my left toes .
Maybe there is nothing wrong with me like a friend said ☹️
What ever happened to me near Christmas the swelling in my left foot and hands and the rash across my face , felt horrendous, I remember at one point I felt I was tripping then I went cold and started shaking for ten minutes.
Never been through that before at all x
Liston honestly follow your gut I’m sure I have lupus but all my tests say I don’t.
My brain scan is lit up like a Christmas tree ! But no one is particularly worried
I twitch and jolt all the time I get rashes ! Temp swings no one really knows what to do with me but like you I say to myself now if it was that bad they would no by now ! Ms was my biggest fear (my mum had it and passed last year ) she had a awful progression.
But now I don’t care ! Il be here today tomorrow who knows I’m not going to spend all my life worried and panicking over this crap! I know it’s hard when you don’t feel well an I’m sure like me it’s underlying issue
But stress really dose make it worse !
All my brain lesions are in the right area for early onset dementia!
I twitch so much I convinced myself I had mnd
I worried so much and cried so much that I wasn’t living my children that I was worried for I just sat googling on my phone 🤯
Please be kind to yourself
Be thankful your mri was okay that’s a good sign and even if it isn’t god so many things can cause it !
Like a lot trust me I’ve seen I think nearly every well known doctor in London ! Don’t make my mistakes xxxx
12 years ago i lost my balance from one day to the other, i had had tinnitus for several years, after and MRI to my brain it showed i had an acoustic neuroma, (tumor in my inner ear, so I recommend an MRI, if you haven't had one.
Snap I jerk around a lot and twitch xx
Hi Natz interesting post. I had suffered with some of your symptoms, and have recently had cervical spinal surgery. ACDF is the diagnosis. I am post op 8 weeks now, and most symptoms have gone. I had an MRI and ct scan. Although you say yours was ok, your spine could still be the cause.
Hi
I’ve only had these symptoms well the dizziness and balance for two years the tremors this month and the trapped nerve was this month also and my lip
Had kyphosis for sixteen years and have been told by the professor of endocrine that it’s not caused by my spine or adrenals etc
I’m sure I’ll get to the bottom of it .
I don’t think I could go through surgery plus I don’t have much back pain and I do a lot of yoga which has helped a lot.
X sorry to hear you had that hope you’re recovering well x
Yes I do lips tremors twitching etc
Rheumatologist see neurologist they said it’s nothing I guess it’s part of the disease I have lupus fibromyalgia rheumatoid arthritis
sjojen etc
Hey natz.. I get lip twitching and cheek twitching occasionally.. I started back to work on Monday after 9 weeks off shielding.. I was on my feet all week and the last two nights after work its happened on the top of my left foot and was visable.. I always just put it down to my SLE and never let it bother me to much x
Hi Stacey
Arh thanks for that .
I spoke to my doctor also and she said it’s quite normal and also because it’s to do with stress etc and it’s connected to the brain.
I am still undiagnosed, my appointment had been put on hold now so I only have my doctor to turn too when things are happening.
I feel down today I suffer with dizziness and balance problems have done for a few years yet no one knows why 😢
Today feels worse
Hope you’re okay x
Swollen top lip 
Rash/swollen lips 
Numb face, tongue and lips? UCTD
