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Sjögren's Syndrome Message Board
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Old 01-25-2011, 07:40 PM   #1
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dehydration

I have sicca syndrome, dry eyes and mouth. Symptoms of sjogren's but because my blood work is negative HMO rheumy says it is not sjogren's and his opinion is there is no dr within the HMO who knows how to do the biopsy. This is my question. Can your insides dry up too? lol sounds funny but I am miserable. I drink alot of water, take vitamins, calcium, mag, etc etc My blood work is normal yet every few weeks I start to get severe body cramps, calves, fingers chest wall like I am dehydrated. I drink pedialyte and down glass after glass of water. Eventually the cramping goes away. Doctors are clueless Could sjogren's be causing the dehydration?

 
Old 01-29-2011, 09:57 AM   #2
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Re: dehydration

Hi Mel52,

Sorry you are having difficulty with your diagnosis. I know how frustrating it can be to get a diagnosis. I too get cramping in my calves, and drink more than the recomended 8 glasses of water a day, however I have not tried pedialyte, I might just give that a try.

Yes, your insides can dry up too! Most often with Primary SS. I have difficulty with my lymph glands, lungs, skin, joints, GI system, and peripheral neuropathy, all because of Primary Sjogren's Syndrome. And, I have fibromyalgia so I don't include my muscular pain and cramping, however I do think many times my muscular pain is because of Sjogren's.
Check out this government website:

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp

There you will find information about “extraglandular involvement.”

Also, check out the book The Sjogren's Syndrome Survival Guide by Teri P. Rumpf, Ph.D. and Katherine Morland Hammitt. It is only $16.95 and I found the information in this book to be very helpfull.

I hope this help you to get a proper diagnosis, sometimes we have to educate our doctors. They don't always like it but, you know your body best!

Hugs,
Robin

Last edited by syrob; 01-29-2011 at 12:36 PM. Reason: I replaced the removed quote and website address as they meet the posting rules

 
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Old 01-29-2011, 06:52 PM   #3
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Re: dehydration

thanks for your response. I too have fibromyalgia. I had breast implants, one had ruptured but was undiagnosed as this was the early 90's and there was no info out there. I improved so much after they were removed, no more hair falling out, fog etc, but was left with the fibro and reynauds. The dryness didn't bother me and I was able to work, just pacing myself as necessary. My first rheumotologist had diagnosed me with the sicca syndrome and MCTD even though blood work was negative. He was very well respected through-out the country. I didn't see him for years because I was doing ok. I was then hurt at work which required back surgery and wrist surgery. I was never able to return back to work. My husband retired and we switched to an HMO. Now the rheumotolgist I have is new to the field and as far as I am concerned needs some life experience. He went to school with my son. Yikes I am getting old. My symptoms after my injury all went crazy. Everything is blamed on the fibro. I had symptoms of ms but my puncture was ok Because I lost the vision in one eye for a few minutes, I had a brain scan that indicated multiple unusual calcifiations and abnormal brain shrinkage. I still have no diagnosis as the drs didn't know what they were. I have severe right side pain but nothing shows up.I get strange rashes and I can't handle the sun or heat anymore. As far as the cramping, I am at a loss. I take calcium, magnesium,etc etc because I have osteroporosis. It is very frustrating. I am going to check out the site you sent me right now and I will order the book too. Thank you Melanie

 
Old 01-29-2011, 06:53 PM   #4
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Re: dehydration

oh another thing. I drink tonic water everynight. The quinine is supposed to help but it won't work once you start cramping.

 
Old 01-31-2011, 10:01 AM   #5
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Re: dehydration

Quote:
Originally Posted by Mel52 View Post
oh another thing. I drink tonic water everynight. The quinine is supposed to help but it won't work once you start cramping.
I drink alot of tonic with quinine also! Just because your tests come up negative does not mean that you do not have Sjogrens. When my Rhuemmy diagnosed me she said almost 50% of Sjogren's patients are sero-negative. I did have a postitive Schirmer's at the Optamologists. I sure hope you can find a doctor to help you! SS is the pits and no one should suffer needlessly~!

 
Old 01-31-2011, 04:43 PM   #6
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Re: dehydration

I had the positive schirmeer's test too. The site about sjogren's was fascinating. The first time I went to the ER, the dr said my potassium had dropped but went back up. He said that was interesting and something I should follow up on. I am going to take that article to my primary dr who is going to order more blood tests. The rheumologist will also see the article, but he simply does not accept it is anything other than fibromyalgia as my ANA is negative. I took pictures to him of my rashes. I took him the sjogren's magazine about sjogren's in the brain and he just handed it back to me and said he defers to the neurologist. I had multiple unusual calcifications and abnormal brain shrinkage on my ctscan. No one knows what it is. I saw a neurologist within my HMO but she specializes in ms and my spinal tap was negative. The first rheumotolgist said if it were sjogren's in my brain I wouldn't be able to talk. So the battle continues and I want answers. My current rheumy says treatment wouldn't change anyway, so it doesn't matter. Ah hello? At least knowing would remove the fear factor.

 
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