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Old 10-18-2012, 02:13 PM   #1
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Sjogrens?

I have had a film in my mouth (unable to brush or mouthwash away), bleeding in the mouth, skin coming off inside my mouth, itching and hives all over my body for about a year or so. Also the little white taste buds on my tongue have been growing to about 1/8". I have been pulling them off with tweezers. I just got my complete blood count results. RBC, HEMOGLOBIN, and HEMATOCRIT are all low by a point or two. I have been checked for thyroid and hepatitis, negative on those. Does anyone have an idea of what might be going on with me? Does this sound like Sjogren's?

 
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Old 10-20-2012, 12:35 PM   #2
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Re: Sjogrens?

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Originally Posted by techdanjr68uc View Post
I have had a film in my mouth (unable to brush or mouthwash away), bleeding in the mouth, skin coming off inside my mouth, itching and hives all over my body for about a year or so. Also the little white taste buds on my tongue have been growing to about 1/8". I have been pulling them off with tweezers. I just got my complete blood count results. RBC, HEMOGLOBIN, and HEMATOCRIT are all low by a point or two. I have been checked for thyroid and hepatitis, negative on those. Does anyone have an idea of what might be going on with me? Does this sound like Sjogren's?
not to say that i think it might be this....but try researching lupus and see if your symptoms better match those. reason i say this is because lupus is known for more rashes than other autoimmune disorders. let me know what you think?

 
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Old 10-24-2012, 11:10 AM   #3
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Re: Sjogrens?

Dr said yes to Sjogren's.

 
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Old 10-25-2012, 06:27 AM   #4
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Re: Sjogrens?

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Dr said yes to Sjogren's.
i'm sorry to hear that, but this won't affect your life span...that's the good news, it may just make you miserable. sjogrens affects everyone differently. my symptoms have been, constant heartburn, pain in both legs that keeps me awake at night, severe acid reflux, which has again forced me to take the stomach pills again, and yes...i have the white coat on my tongue and do get sores in my mouth here and there, but i think the worst part is how it affects my intestines. i'm getting pretty fed up blowing up like a b a l l o o n a l l the time and the consistent stomach cramps and pain, but...like i said...it won't kill you. just keep an eye on infections eg. lungs, sores that don't heal, symptoms that persist for more than a few weeks...(just get them checked out), and remember what gloria gaynor sang.....i will survive! oh...if it is affecting your mouth like this....don't eat a lot of sweets, salt, or spicy foods. try sucking on sugarless candies, switching to a toothpaste that will keep the acids from destroying your teeth and non-alcohol mouthwashes. i find that chewing peppermint gums even gives me heartburn, so juicy fruit seems to do the trick. if you research the web, you can find a l l kinds of info at the sjogrens foundation site. hang in there...i feel for you. keep in touch and let me know how you're doing, okay.
sorry...had to spread the word b a l l o o n out due to the fact that it won't accept the letters a l l.

Last edited by boobootwo; 10-25-2012 at 06:31 AM. Reason: post not accepting the letters a l l.

 
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Old 10-26-2012, 09:25 AM   #5
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Re: Sjogrens?

Why can't you put a l l?

 
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Old 10-29-2012, 07:29 AM   #6
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Re: Sjogrens?

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Originally Posted by boobootwo View Post
i'm sorry to hear that, but this won't affect your life span...that's the good news, it may just make you miserable. sjogrens affects everyone differently. my symptoms have been, constant heartburn, pain in both legs that keeps me awake at night, severe acid reflux, which has again forced me to take the stomach pills again, and yes...i have the white coat on my tongue and do get sores in my mouth here and there, but i think the worst part is how it affects my intestines. i'm getting pretty fed up blowing up like a b a l l o o n a l l the time and the consistent stomach cramps and pain, but...like i said...it won't kill you. just keep an eye on infections eg. lungs, sores that don't heal, symptoms that persist for more than a few weeks...(just get them checked out), and remember what gloria gaynor sang.....i will survive! oh...if it is affecting your mouth like this....don't eat a lot of sweets, salt, or spicy foods. try sucking on sugarless candies, switching to a toothpaste that will keep the acids from destroying your teeth and non-alcohol mouthwashes. i find that chewing peppermint gums even gives me heartburn, so juicy fruit seems to do the trick. if you research the web, you can find a l l kinds of info at the sjogrens foundation site. hang in there...i feel for you. keep in touch and let me know how you're doing, okay.
sorry...had to spread the word b a l l o o n out due to the fact that it won't accept the letters a l l.
I have much of the same syptoms that your do. What do you attribute the blowing up to? It's really aggravating and my clothes are tight and uncomfortable! Why would there be such fluid retention? I wonder if there is something else that doesn't show up yet. Very annoying!

Be well

 
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Old 10-30-2012, 10:26 AM   #7
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Re: Sjogrens?

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Originally Posted by Boxermama View Post
I have much of the same syptoms that your do. What do you attribute the blowing up to? It's really aggravating and my clothes are tight and uncomfortable! Why would there be such fluid retention? I wonder if there is something else that doesn't show up yet. Very annoying!

Be well
well...from what i've read....we don't do well with fiber even though we need it in our bodies to help with digestion. could be other things in some of the foods we eat too. it's not actually fluid retention....it's gas and yes it's extremely annoying. i believe that we also don't digest as quickly as someone with a normal digestive system because we tend to get inflammation in our intestines, esophagus, stomach, etc. i first noticed my flareup when my stomach became so acidy that i couldn't stand it and then it seems that inflammation just travels all over my body and eventually starts to ease up. i went to this clinic and the doc was quite informed about sjogrens and told me that these flareups can be seasonal....fall and spring were the ones that he mentioned were most prominent. i can recall being flared up nearing spring this year too. who knows. try maalox extra strength with anti-gas. it does help some. hang in there...you will handle it.

 
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Old 10-30-2012, 10:29 AM   #8
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Re: Sjogrens?

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Originally Posted by techdanjr68uc View Post
Why can't you put a l l?
cause every time i typed a l l in...the site would put an asterick in place of the letters.

 
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Old 01-23-2013, 09:34 AM   #9
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Re: Sjogrens?

Every once in a while i will wake up and not be bloated. It is awesome! I wish it were like that all the time. I am thinking about trying probiotics to help with the bloating and gas (oh yeah, 24/7 gas). This situation is so unpleasant. I do take omeprazole off and on for the acid reflux and it does help.

 
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Old 01-24-2013, 09:42 AM   #10
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Re: Sjogrens?

Quote:
Originally Posted by techieguy68 View Post
Every once in a while i will wake up and not be bloated. It is awesome! I wish it were like that all the time. I am thinking about trying probiotics to help with the bloating and gas (oh yeah, 24/7 gas). This situation is so unpleasant. I do take omeprazole off and on for the acid reflux and it does help.
why do you think i've been single for so many years....yes...gas 24/7! i can't even live with myself let alone anyone else...lol. not to mention a dried up man cave, so to speak...lol. i'm not generally bloated when i wake up. mine all starts as soon as i start to eat anything and i stear clear from large meals, eating small ones all day. i don't like to stay on the stomach pills permanently as they can eventually cause kidney and liver problems in some people, so i take them for a few months and then slowly ween off of them until the next flare. does the omeprazole work with the gas problem?
my brain is going too, so had to edit. i wanted to tell you to read the labels on some probiotics as they actually list that some are not to be taken by people with autoimmune disorders.

Last edited by boobootwo; 01-24-2013 at 09:44 AM. Reason: addition

 
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