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ac489 profile image
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Hello to all my Lupus family! Been away in hospital for a week and missed my encouraging lupie family I have grown to be part of. So I ended up going to er thinking I was having a stroke. I was having dizzy spells like I was ready to pass out and back of head and neck would start hurting and felt back of brain trembling. Could not keep my balance and my brain would get very confused and I was even slurring my words and could not say what I was trying to say or answer questions because so confused. My left side numb in arm, hand and face. It felt like some kind of seizure but I was fully awake and aware of my surroundings. It happened a couple of times and not that bad so my husband tried to make appointment with doctor last Monday when I was having an episode but there was an issue with insurance and he finally got it straightened up. I felt better Monday afternoon and Tuesday morning but after I made breakfast, it started happening again and getting quite scary at that point so my husband just took me to emergency room instead of trying to get into doctor office. They kept me there till Friday evening in hospital. They did a lot of blood tests, brain scan, brain mri, chest x-ray, and heart ultra sound and all came back normal. No sign of stroke or ms doctor said and kidneys working fine but thyroid levels were very off. I guess doctor had read tests wrong before and was decreasing my synthroid when it should have been increased so it was messing up my whole system. Luckily it didn't do more harm. He increased my dosage now and hoping that will take care of a lot of issues. I still need to see Rheumatologist February fourth and am feeling a bit better but still weak and dizzy/unbalanced but doctor said it would take a couple of weeks to feel better. Good to be back home.

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ac489
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diane1428 profile image
diane1428

Hi ac489

I really do know what it feels like .

Two years ago I was having upto 15pf these 'seizures' a day. I could hardly talk or walk or function but that was before I was diagnosed.

After putting me on warfarin n hydro y'all it is better. Still get brain shaking like a whisk and memory loss n slurring of words but not nearly as much.

Best of luck

Regards Diane

ramada profile image
ramada

I'm glad you're home and feeling little well.i get these symptoms but my doctor goes it's related to anxiety and stress,don't know if my doctor is right should I still be concerned?

Try taking plenty of rest..xx

ac489 profile image
ac489 in reply to ramada

I would be concerned because I can see some being anxiety or stress but I don't want to take chances anymore. It felt terrible and scary and just thinking it could have caused some major damage so I would get second opinion if doctor won't listen. I was trusting that my doctor was doing the right thing cutting my medicine down and it was actually the opposite of what I needed and doing me more harm. Doctors are human and can make mistakes in reading labs or even just brush it off if they are in a hurry with too many patients. Better not to take chances with our health so my husband and I will be learning the numbers and reading labs to verify for ourselves now.

baba profile image
baba

Read up on Hughes Syndrome/APS

hughes-syndrome.org/

healthunlocked.com/hughes-s...

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