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698d
I've hit a stall in getting diagnosed. I have Sjogrens which means I have another auto immune disorder but don't know which one. I also have a lot of neurological symptoms. Does anyone have any advice? We're really struggling.
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Fibromyalgia (FM)
Prednisone
Spasms of muscles
Sjogren's syndrome (SjS, SS)
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560d
@TwinMommaBear what is pots
0
649d
Lupus
How were you diagnosed? Are you taking any medications specifically for Sjogren’s?
662d
Those symptoms could be primary Sjogren’s. Neurological issues and brain fog are common.
674d
Have they looked into POTS?? Could be why you are passing out but seems like everything else fits with what comes with the syndrome
697d
I was first diagnosed with MS then found out through testing that I have sjogren's
It took over 4 years to find my secondary autoimmune diesease. Hang in there!
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@Hunnyb316 what was the final piece or pieces for you getting diagnosed?
@RainbowPearl I started having more symptoms that kind of led us to a more narrow pool of bloodwork to be done. I had Ankylosing Spodylitis for years and just recently got diagnosed with Sjögren’s syndrome. It’s a huge relief to finally have a dx. I know it will be for you too.
Sjögren’s can be primary, meaning it is possible to only have that. Are you seeing a rheumatologist?
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@Cathyliz I had no idea Sjogrens could be primary. My rheumatologist said it always came with another auto immune disease
@RainbowPearl , it can be primary. I have a rheumatoid factor of 298, a positive ANA, anti- CCP of over 200, a high sed rate but do not have RA. Just sojgrens. Have been getting test for another autoimmune disease, myositis but so far it's negative. But when I was having the symptoms, Dr gave me 7 days of Prednisone and symptoms went away.
@Cathyliz yes but I'm at the point where I'm seeking a second opinion. I also have abnormal weight gain, abnormal stretch marks, may or may not have a pituitary miroadenoma, heat and cold intolerance. Fibromyalgia, polyarthritis...I just don't know what to do anymore. I can't work, can't drive, can't go places on my own.
@RainbowPearl it's going to be okay. I know it seems overwhelming right now but you and a doctor are going to figure this out and it's all going to be okay. I would absolutely get a second opinion, your Dr needs to diagnose you so you can be treated properly
What neurological symptoms?
@Taurusgreen short term memory loss, muscle spasms and hand tremors, nominal aphasia, (speech problems) random passing out followed by complete memory loss for the day, and worsening migrains.
668d
@RainbowPearl ask to be tested for POTS! Also get your thyroid checked.
689d
@RainbowPearl i go through almost everything you listed and i was told the memory loss is due to the pain i battle from fibromyalgia and the passing out is psuedoseizures.
695d
@RainbowPearl my thought is possibly same as mine I have sjogrens and fibromyalgia and my systems are similar
@RainbowPearl omg I'm so sorry 😔 if you ever need to talk I'm here
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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