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Old 05-27-2013, 10:10 PM   #61
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The two symptoms that are usually the first to show up in sjogren's syndrome are very dry eyes and dry 'cottony' mouth. Joint pains, other symptoms seem to follow. Auto-immune diseases are miserable and hard to identify quickly.
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Old 05-27-2013, 11:16 PM   #62
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When I was in my mid thirties, I had severe joint pain and my hands and knees swelled up horribly. I was first diagnosed with Lupus and then RA but my rheumatologist suspected it was something much simpler -- Fifth disease. Sure enough, that's what it was. Apparently I never got it as a child.
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Old 05-27-2013, 11:18 PM   #63
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Haven't read any posts but the first, but wanted to give some input. I developed severe joint pain 6 year ago, as well as muscle pain and muscle fatigue. Could barely turn over in bed without my husband's help. Would have to put pillows under my arms after knitting for five minutes. Could hardly walk by the end of the day the pain in my heels and ankles was so bad. The only tests that came back positive for anything was low vitamin D level, as my muscle enzymes were very elevate, as if I had ran a marathon. I went to all the same docs as your sister. No one had an answer. My rheumatologist told me that it was an undifferentiated auto-immune connective tissue disease. That's what they call it when they don't know what it is. He said it could take years before a test comes back positive, or I may never know at all.

The rheumatologist wanted to put me on Plaquenil, which is for lupus, or methotrexate, which is for rheumatoid arthritis. I declined taking either. They both have side effects, and since no one could tell me what I had, I didn't want to be a guinea pig.

After doing much research, I stopped eating gluten, and started taking many different vitamins and minerals. Within four weeks I felt 100% better. I still have pain, but no where near as bad. Doctors roll their eyes at me when I tell them. I don't care. I know what works and what doesn't. I know how much activity I can tolerate, and I know what causes me to have bad flares. I conrol the pain with ibuprofen, rest, diet & exercise. I think my symptoms most resemble lupus.

My rheumatologist moved away a few years ago, and I haven't found one I am comfortable with since then. They either want to say I have fibromyalgia, or just want to put me on meds. It is disheartening. Best wishes to your sister. It is a long road.
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Old 05-28-2013, 12:53 AM   #64
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Quote:
Originally Posted by North of Mouse View Post
The two symptoms that are usually the first to show up in sjogren's syndrome are very dry eyes and dry 'cottony' mouth. Joint pains, other symptoms seem to follow. Auto-immune diseases are miserable and hard to identify quickly.
I agree. I was diagn with it, and the Dr told me it normally can take years, and he spotted the symptoms quickly.. SS, is very hard to diagnose..
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Old 05-28-2013, 12:19 PM   #65
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FWIW, here is my situation:
My rheumatologist diagnosed me with CREST Syndrome a few years ago. I spent 3 months on Plaquenil, then discontinued treatment entirely in order to have a baby.
I suffer from excrutiating joint pain, dizziness, fatigue, discoloration of extremeties and patches of skin irritation.
We discovered that Lupus "runs" in my family paternally (a pedestrian explanation). My sister was diagnosed with Lupus, but my doctor felt that my symptoms fell more into the CREST category than Lupus.
I am just now in the process of weaning after a year of breastfeeding. What has kept me going all of this time with no pain medication? Exercise. Surprisingly, I found that the more I ran, the better level of comfort I experienced with my joint pain.
The next phase of treatment is supposed to be methotrexate (sp?)... but I'd like to hold off on that for as long as possible.
Good luck with your sister - it is quite difficult to sit idly with no real explanation for a loved one's discomfort.
[please excuse typos... replying in a hurry]
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Old 05-28-2013, 05:56 PM   #66
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Quote:
Originally Posted by TeresaNJ View Post
Haven't read any posts but the first, but wanted to give some input. I developed severe joint pain 6 year ago, as well as muscle pain and muscle fatigue. Could barely turn over in bed without my husband's help. Would have to put pillows under my arms after knitting for five minutes. Could hardly walk by the end of the day the pain in my heels and ankles was so bad. The only tests that came back positive for anything was low vitamin D level, as my muscle enzymes were very elevate, as if I had ran a marathon. I went to all the same docs as your sister. No one had an answer. My rheumatologist told me that it was an undifferentiated auto-immune connective tissue disease. That's what they call it when they don't know what it is. He said it could take years before a test comes back positive, or I may never know at all.

The rheumatologist wanted to put me on Plaquenil, which is for lupus, or methotrexate, which is for rheumatoid arthritis. I declined taking either. They both have side effects, and since no one could tell me what I had, I didn't want to be a guinea pig.

After doing much research, I stopped eating gluten, and started taking many different vitamins and minerals. Within four weeks I felt 100% better. I still have pain, but no where near as bad. Doctors roll their eyes at me when I tell them. I don't care. I know what works and what doesn't. I know how much activity I can tolerate, and I know what causes me to have bad flares. I conrol the pain with ibuprofen, rest, diet & exercise. I think my symptoms most resemble lupus.

My rheumatologist moved away a few years ago, and I haven't found one I am comfortable with since then. They either want to say I have fibromyalgia, or just want to put me on meds. It is disheartening. Best wishes to your sister. It is a long road.
Nearly my story, again. I got the Sjogrens diagnosis, and did go on Plaquenil for a while. When I got the breast cancer diagnosis, the surgeon told me that Plaquenil is an immune suppressor! It helps with pain, but probably makes you worse in the long run. I'd say you were right to say no! I too, am controlling my pain now with diet and supplements. But I still have the very dry eyes, mouth, nose, skin, other parts. Living in the desert does not help.
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Old 05-28-2013, 05:57 PM   #67
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CREST syndrome is a new one. Will have to look that one up.
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Old 05-31-2013, 02:26 PM   #68
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Holy heck...we got a diagnosis!!

Babesiosis. She had to demand the test for it even though the doctors kept saying "Nah...I don't think it's that." Just got the results today. She's is so relieved to have an answer. The unfortunate part is that since it went undiagnosed for so long it may up to two weeks for the drugs to work, but my sister is so happy!
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Old 05-31-2013, 02:35 PM   #69
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Wow - I had to Google that. So glad there's a diagnosis and treatment plan!
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Old 05-31-2013, 02:47 PM   #70
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Holy heck...we got a diagnosis!!

Babesiosis. She had to demand the test for it even though the doctors kept saying "Nah...I don't think it's that." Just got the results today. She's is so relieved to have an answer. The unfortunate part is that since it went undiagnosed for so long it may up to two weeks for the drugs to work, but my sister is so happy!
She had to demand for the test. Nice. I am so glad that she put the full court press on them.

Well that is a new disease on me, thanks for sharing your story. Glad she can be on the mend now.
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Old 05-31-2013, 05:26 PM   #71
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Glad she knows the cause and can begin treatment! I have my second opinion dr.'s appointment later this week. Keep your fingers crossed!
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Old 05-31-2013, 05:56 PM   #72
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I have babesiosis and have been treating it for a few years now. Just let her know it may take more that two weeks and can take awhile to get better but with proper treatment she will see improvement. She also may want to be tested for other tick borne illnesses as usually with babesiosis there are others. Mine came with lyme and bartonella

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Old 05-31-2013, 06:13 PM   #73
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Quote:
Originally Posted by Jennasis View Post
Holy heck...we got a diagnosis!!

Babesiosis. She had to demand the test for it even though the doctors kept saying "Nah...I don't think it's that." Just got the results today. She's is so relieved to have an answer. The unfortunate part is that since it went undiagnosed for so long it may up to two weeks for the drugs to work, but my sister is so happy!
I am afraid to say that I believe a lot of the immune disorders are lyme and other co infections. I am glad you got a good diagnosis. I would stay on top of it. Treatment can be long and hard. Try to find a local support group. It has been a life saver to me. To be able to share with others who know is so important. Good luck!
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Old 05-31-2013, 06:17 PM   #74
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I have babesiosis and have been treating it for a few years now. Just let her know it may take more that two weeks and can take awhile to get better but with proper treatment she will see improvement. She also may want to be tested for other tick borne illnesses as usually with babesiosis there are others. Mine came with lyme and bartonella

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My kids and myself have these, and Mycroplasma. My daughter also has Rocky mountain spotted fever. Scary! They are finding it is a big issue with Lyme. I am so glad she will get the help she needs. If anyone reading this thinks they could have any of these issues, Please see a lyme literate DR. It truly has saved my kids life!
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Old 05-31-2013, 06:44 PM   #75
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Quick question...is babesiosis CURABLE or is it something TREATABLE? In other words, will she be able to "get rid of it" or is it something they will treat the symptoms of and try to keep it from getting worse or flaring up?
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