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Question about Sjogrens and discomfort in legs. Also skin feels itchy

Posted by dunbun13 @dunbun13, Mar 14, 2023

I have Sjogrens and have not had too many problems until lately.
Achy legs, itching, and at times extreme heat, much like a hot flash,but I had a Hysterectomy 30 years ago. My Primary Dr. Said I should not be having hot flashes and I agree with her. I will be seeing my Rheumatologist next month, and hope she can shed some light on these recent events in my body. Wondering if any one of you have experienced these?

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gema98 | @gema98 | Apr 3, 2023
In reply to @burlingtongirl "Hi there, I was diagnosed with Sjogrens about three years ago. I itch throughout the day...." + (show)
@burlingtongirl

Hi there, I was diagnosed with Sjogrens about three years ago. I itch throughout the day. It is in certain areas only. Not after I go to bed. My back especially. Drives me crazy. There are so many other things, especially the glands in my neck.

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Do you have high liver enzymes? Many of us with these autoimmune diseases find out we have PBC which attacks our liver and the bile will then cause itching. You can look it up on any reputable medical site.

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dunbun13 | @dunbun13 | Apr 3, 2023

Thank you, I am seeing a Rheumatologist this Friday and I will share that with her. I am also struggling with extreme heat. Hope to get some help with several issues.

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2 replies
tabuschlen | @tabuschlen | Apr 4, 2023
In reply to @dunbun13 "Thank you, I am seeing a Rheumatologist this Friday and I will share that with her...." + (show)
@dunbun13

Thank you, I am seeing a Rheumatologist this Friday and I will share that with her. I am also struggling with extreme heat. Hope to get some help with several issues.

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MS is often the autoimmune diagnosis when there's autoimmune and nerve issues with trouble with heat...
Ie, I have been diagnosed with MS, all the other symptoms are just tossed in there as a part of MS...
Sometimes they have a drug or research approved for MS that isn't approved for other autoimmune yet....
Getting a diagnosis with treatment options seems to be important 😭
Hope they can help you

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jebbss8 | @jebbss8 | Apr 6, 2023

i have tested negative for Sjogrens several times. However, I exhibit many symptoms. My understanding is that this is normal, with positive testing only occurring during flareups in some people.

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2 replies
dunbun13 | @dunbun13 | Apr 6, 2023
In reply to @jebbss8 "i have tested negative for Sjogrens several times. However, I exhibit many symptoms. My understanding is..." + (show)
@jebbss8

i have tested negative for Sjogrens several times. However, I exhibit many symptoms. My understanding is that this is normal, with positive testing only occurring during flareups in some people.

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There are specific blood test for Autoimmune Diseases, not necessarily Sjogrens. But my Dr. Informed me that the Blood test and symptoms you are having are indication of Sjogrens. So that is how they figure out the treatment. I hope I have helped a little. I am just sharing the little I know. I am still having several Sjogrens symptoms,

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1 reply
jebbss8 | @jebbss8 | Apr 6, 2023
In reply to @dunbun13 "There are specific blood test for Autoimmune Diseases, not necessarily Sjogrens. But my Dr. Informed me..." + (show)
@dunbun13

There are specific blood test for Autoimmune Diseases, not necessarily Sjogrens. But my Dr. Informed me that the Blood test and symptoms you are having are indication of Sjogrens. So that is how they figure out the treatment. I hope I have helped a little. I am just sharing the little I know. I am still having several Sjogrens symptoms,

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I am being treated for the symptoms even without a clear diagnosis.

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1 reply
dunbun13 | @dunbun13 | Apr 6, 2023
In reply to @jebbss8 "I am being treated for the symptoms even without a clear diagnosis." + (show)
@jebbss8

I am being treated for the symptoms even without a clear diagnosis.

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May I ask if you are on a Prescription for symptoms,I am thinking about trying one if my Rheumatologist recommends one. I am seeing her tomorrow

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marye2 | @marye2 | Apr 7, 2023
In reply to @dunbun13 "Thank you, I am seeing a Rheumatologist this Friday and I will share that with her...." + (show)
@dunbun13

Thank you, I am seeing a Rheumatologist this Friday and I will share that with her. I am also struggling with extreme heat. Hope to get some help with several issues.

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The heat that comes on is sudden, not like the freight train feeling of hot flashes. I have always wondered about whether it is a vagal response to something else. Often a cool pack on the back of my neck helps, particularly at night.

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liveitup | @liveitup | Apr 7, 2023
In reply to @jebbss8 "i have tested negative for Sjogrens several times. However, I exhibit many symptoms. My understanding is..." + (show)
@jebbss8

i have tested negative for Sjogrens several times. However, I exhibit many symptoms. My understanding is that this is normal, with positive testing only occurring during flareups in some people.

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I always test negative for Sjogrens through blood tests, but my lip biopsy was quite definite. I have it, for sure.

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1 reply
jebbss8 | @jebbss8 | Apr 8, 2023
In reply to @liveitup "I always test negative for Sjogrens through blood tests, but my lip biopsy was quite definite...." + (show)
@liveitup

I always test negative for Sjogrens through blood tests, but my lip biopsy was quite definite. I have it, for sure.

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Is there a benefit of the biopsy? Or just keep treating symptoms?

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