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Lupus or sjogrens syndrome
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amother




Puce


Post  Thu, Apr 26 2018, 5:48 pm
Do you or do you know anyone that has Lupus or sjogrens syndrome? If you do how were you diagnosed?
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1091




 
 
 


Post  Thu, Apr 26 2018, 5:50 pm
I have lupus. I was diagnosed as a teen. The docs thought I was diabetic.
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amother




Chartreuse


Post  Thu, Apr 26 2018, 5:53 pm
I have a friend with sjogrens. It was a long and brutal journey to diagnosis.
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amother




Puce


Post  Thu, Apr 26 2018, 8:56 pm
In the past few years my Dr. And dentist suspected Lupus and Sjogrens but the results were always negative. I recently developed a eye condition my eye Dr. claims that she can guarantee that I have Lupus. I'm not so symptomatic for Lupus now but I do have ever symptom for sjogrens. Is it possible that I have it and the tests are negative anyways. I was curious if anyone had this experience of being wrongly diagnosed.
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Frumwithallergies




 
 
 


Post  Thu, Apr 26 2018, 9:05 pm
There are blood tests that help to diagnose Lupus; Sjogren is a constellation of symptoms. Both are most often (but no exclusively) diagnosed and treated by rhumatologists.
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esuss




 
 
 


Post  Thu, Apr 26 2018, 9:13 pm
Did they test for juvenile rheumatoid arthritis? This could come with eye infection. All the same family of diseases as lupus and sjogrens.
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amother




Slategray


Post  Thu, Apr 26 2018, 9:17 pm
Both Lupus and Sjogrens are often misdiagnosed Lyme disease.
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amother




Puce


Post  Thu, Apr 26 2018, 9:23 pm
I've seen a rheumatologist a while ago at that time I had a terrible rash with lots of inflammation but the the results were negative. The opthamologist claims that it's hard to diagnose and even though it was negative there's a big chance that I can have it. I'm curious if anyone had this experience.
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amother




Ruby


Post  Thu, Apr 26 2018, 9:38 pm
Just wondering, why would you think a lupus diagnosis is misdiagnosed Lyme disease.
I find it interesting that any time someone has not typical symptoms, someone pipes in that it could be lyme. Most chronic symptoms are not related to lyme.
( says a mother who had two children with lyme disease)
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amother




Chartreuse


Post  Thu, Apr 26 2018, 9:40 pm
amother wrote:
In the past few years my Dr. And dentist suspected Lupus and Sjogrens but the results were always negative. I recently developed a eye condition my eye Dr. claims that she can guarantee that I have Lupus. I'm not so symptomatic for Lupus now but I do have ever symptom for sjogrens. Is it possible that I have it and the tests are negative anyways. I was curious if anyone had this experience of being wrongly diagnosed.


Can I ask what the eye condition was? Was it uveitis or similar?
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amother




Puce


Post  Thu, Apr 26 2018, 10:06 pm
I can't remember what it was because she got me so distracted with Lupus. Only after I left did I realize that I dint
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amother




Chartreuse


Post  Thu, Apr 26 2018, 10:10 pm
amother wrote:
I can't remember what it was because she got me so distracted with Lupus. Only after I left did I realize that I dint


I had an eye condition years ago. At the time, my eye dr sent me for testing for lupus, rheumatoid arthritis, Lyme disease, and a few others which I can’t rmember anymore.
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amother




Puce


Post  Thu, Apr 26 2018, 10:10 pm
I can't remember what it was because she got me so distracted with Lupus. Only after I left did I realize that I didnt take notice of the name. I'll be going back this week so I'll ask her. She did ask me if I was ever tested on lime. I actually had lime disease about 20 years ago but it was caught on time and I was treated for it until I was cleared.
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amother




Chartreuse


Post  Thu, Apr 26 2018, 10:17 pm
amother wrote:
I can't remember what it was because she got me so distracted with Lupus. Only after I left did I realize that I didnt take notice of the name. I'll be going back this week so I'll ask her. She did ask me if I was ever tested on lime. I actually had lime disease about 20 years ago but it was caught on time and I was treated for it until I was cleared.


you Could have had it dormant in your body all these years and it was reactivated. I Would absolutely get it checked out by an llmd. Check out ilads.org for a recommendation to a dr in Your area who specializes in Lyme.
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amother




Chartreuse


Post  Thu, Apr 26 2018, 10:19 pm
amother wrote:
Just wondering, why would you think a lupus diagnosis is misdiagnosed Lyme disease.
I find it interesting that any time someone has not typical symptoms, someone pipes in that it could be lyme. Most chronic symptoms are not related to lyme.
( says a mother who had two children with lyme disease)


This is incorrect information. Symptoms present differently. Specially when Lyme was present in the body for a long time.
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Frumwithallergies




 
 
 


Post  Thu, Apr 26 2018, 10:32 pm
Many auto-immune diseases have overlapping symptomatology; a friend of mine had severe, inflammatory arthritis but aside from an elevated C reactive protein, her other markers were negative. Someone (very wisely) suggested Crohn's disease. Well, her colonoscopy and biopsies confirmed Crohn's.

Ankylosing spondilitis can also give uveitis, arthritis etc.

Syphi*lis C'v's can also cause uveitis and many other symptoms.

Not everything is Lyme disease (although it is good to keep in mind).

"I Would absolutely get it checked out by an llmd. Check out ilads.org for a recommendation to a dr in Your area who specializes in Lyme." These sentences keep coming up (methinks an amother wrote this in a PANDAS topic).
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amother




Slategray


Post  Thu, Apr 26 2018, 10:41 pm
amother wrote:
I can't remember what it was because she got me so distracted with Lupus. Only after I left did I realize that I didnt take notice of the name. I'll be going back this week so I'll ask her. She did ask me if I was ever tested on lime. I actually had lime disease about 20 years ago but it was caught on time and I was treated for it until I was cleared.
If you actually had confirmed lyme, than the lupus is for sure a symptom of that.Seems it has reactivated. You can google lyme induced lupus.
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amother




Cerise


Post  Thu, Apr 26 2018, 10:41 pm
Alright, you just said my exact story.

I was chasing a diagnosis for ten years. Lupus and Sjogrens were high on the suspect list. But blood tests confirmed not...

And I had horrible body rashes. So much pain! And those red painful eyes were horrific.

Well, I got to the bottom of it: steroids.

I'd been using steroids creams and prednisone, wrongly prescribed, and they caused all of the symptoms from dry eyes to rashes to increasing IgE, etc.

Have you been on steroids that you are aware of?

Or are you a person that buys health care products from health stores or small vendors?
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amother




Cerise


Post  Thu, Apr 26 2018, 10:46 pm
amother wrote:
I've seen a rheumatologist a while ago at that time I had a terrible rash with lots of inflammation but the the results were negative. The opthamologist claims that it's hard to diagnose and even though it was negative there's a big chance that I can have it. I'm curious if anyone had this experience.


How did you get that rash under control?

What were your other symptoms when you had that rash? Any changes in body temperature or heat/cold tolerance? At any time where your rashes flaky? Ever any burning sensation or crazy, crazy itch?
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amother




Slategray


Post  Thu, Apr 26 2018, 10:48 pm
Frumwithallergies wrote:
Many auto-immune diseases have overlapping symptomatology; a friend of mine had severe, inflammatory arthritis but aside from an elevated C reactive protein, her other markers were negative. Someone (very wisely) suggested Crohn's disease. Well, her colonoscopy and biopsies confirmed Crohn's.

Ankylosing spondilitis can also give uveitis, arthritis etc.

Syphi*lis C'v's can also cause uveitis and many other symptoms.

Not everything is Lyme disease (although it is good to keep in mind).

"I Would absolutely get it checked out by an llmd. Check out ilads.org for a recommendation to a dr in Your area who specializes in Lyme." These sentences keep coming up (methinks an amother wrote this in a PANDAS topic).
The reason autoimmune disorders have overlapping symptoms is because they have common causes. The body doesn't turn on itself in a vacuum. The etiology of autoimmunity is complex and multifactorial, but very often when you dig deep enough you will find chronic, untreated infections. So the person may present with Crohns, or Lupus, or Sjogren's, or even Pandas, but beneath it all is a chronic untreated infection. You're right about syphillus but that's not nearly as common as Lyme.
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