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
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.
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.
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.
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 !
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
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
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.
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.
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.
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
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