HealingWell
Search Close Search
☰

Sjogrens misdiagnosed

Support Forums
>
Sjogren's Syndrome
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/12/2023 12:44 AM (GMT 0)
Diagnosed 3 years ago with sjogrens...something just didn't seem right..didn't have dry eyes dry mouth etc. Recently got another opinion..dr immediately said it's not sjogrens..waiting on the dr to get back with me but trying my own research...blood work showed low white blood counts low vitamin d and high uric acid but nothing on the ana markers this time.
I have had chronic pain that feels like I have ms or bone cancer...muscle weakness...hard to stand and get moving...some days are fine some are bad...being very cold..hot baths make me feel just fine...pain that is worse than it should and lasts longer than it should...i.e...I stepped on my garden hose...that shouldn't hurt but it did..2 hours later it still feels like I'm stepping on it...my joints do not hurt to the touch..x rays show no inflammation but I feel full of inflammation....anyone have any suggestions?.the depression that goes with it is terrible....if my dr doesn't know I might ask for a lyme disease test...thx
Posted 3/15/2023 5:03 AM (GMT 0)
Did you ever get a different diagnosis? I'm so frustrated with my daughter's diagnosis that doesn't seem at all consistent with her symptoms!!! She has been bedridden for a month. When she get out of bed, the pain is so horrific, it's unbearable. After a month of being unable to even sit up in bed, we thought we'd try getting a manicure. Big mistake! After 30 minutes of sitting in a chair, the pain was so unbearable, she passed out. She was hot and clammy and sweaty and then she threw up and couldn't get up out of the chair.

Her rhemotologist diagnosed her with ONLY sjogren's. Gave her no prescriptions to help with her actual symptoms. I'm just wondering if you ever got any answers since we are in a similar situation. Her symptoms are excruciating nerve and joint pain in her legs and elbows. She has none of the classic sjogren's symptoms. Did you ever get a different diagnosis?
Posted 3/15/2023 1:03 PM (GMT 0)
When I was diagnosed they put me on steroids and methotrexate.....I went to the Cleveland clinic six weeks ago....they did additional tests...all these years I was misdiagnosed...a simple vitamin d test showed my counts very low...high dose vitamin d and 3 days later I was already feeling better...look up the symptoms, they look similar to many autoimmune diseases. Please get her to cleveland clinic,mayo,John Hopkins etc and dont fool around.hope this helps..praying she feels Bbetter soon
Posted 3/15/2023 3:11 PM (GMT 0)
Oh my gosh! Her bloodwork showed she’s very low on vitamin d and she literally just started taking 50,000 IU vitamin d once a week. You are giving me hope!!! Thank you, thank you.
Posted 3/15/2023 4:03 PM (GMT 0)
Keep me posted!! I felt better in just a few days..my count was 18.9 and normal is roughly 30 to 40...I take once a week up to 12 weeks so I guess it takes awhile to get the counts up..only thing that helped were hot baths to soothe the pain..best wishes
Posted 3/15/2023 4:10 PM (GMT 0)
Thank you for responding. My daughter (20 yrs) hadn’t showered in 3 weeks. I finally got her to take a bath with my help after we left the hospital. It did feel good to bathe, but moving at all was so painful and that’s why she hadn’t showered or bathed. This is terrifying. I’m grateful to read your experience because I feel like her rheumatologist is treating her disease but not her as a patient. She’s not listening to her symptoms and how dire her situation is, being completely bedridden.
Posted 3/15/2023 6:27 PM (GMT 0)
Interested in what her vitamin d count was? I felt bad but was never best ridden like that. I coulf function but I can tell you it caused a great deal of depression so keep an eye on her for sure. Dont count out the ER. You can get many tests done quickly that way. Again if she does not feel well soon I would look at one of the top rheumatology hospitals and get an appointment asap.
Posted 3/15/2023 6:35 PM (GMT 0)
Vitamin d was 11
✚ New Topic ✚ Reply