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Post by mfromcanada on Jan 23, 2010 1:58:19 GMT -5
sjogren's syndrome has the symptom of extreme dry mouth, eyes and vagina. I am being tested as I have extreme dry mouth. Anyone been tested positive for this?
Interesting: A low grade lymph node cancer, known as "non-Hodgkin's B-Cell Lymphoma" can eventually develop in up to 10% of patients with Sjögren's Syndrome, a frequency that has been estimated at 44 times the general population.
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Post by mercury on Jan 23, 2010 8:08:29 GMT -5
Hi M, I think thats (non-Hodgkin's B-Cell Lymphoma) the type of cancer that Glennb has.
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Post by toni on Jan 23, 2010 9:22:27 GMT -5
M, How odd, last night I woke up around 2am ish...and couldn't even swallow my mouth was THAT dry. I mean so dry that my tongue was like paper And so rarely do I ever wake up after I go to sleep till morning. I took a glass of water upstairs with me, and covered it with saran, (just incase) of something (critter) remotely possibly getting into it. But I was so concerned that I wanted the "water right there on the night stand"...because "that dry" wasn't normal. Is that how yours got? This is the second time this has happened. It was actually so dry it was scary.
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Post by mfromcanada on Jan 23, 2010 11:07:00 GMT -5
toni, my tongue is like paper every morning now. I had to get out of bed this am as I could not sleep, my mouth was so dry. Sometimes, I can hardly speak or swallow. Apparently you stop producing saliva. It also effects the eyes and I must use drops, the doctor said.
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Post by toni on Jan 23, 2010 11:14:46 GMT -5
Oh my goodness M, I'm so sorry. I can't imagine going through that more than once every blue moon.
I know what you mean, when you said you can't swallow or speak, ( YES )...I know. I went into a slight panic early this am when I woke up. It is that dry-and it's frightening, cause there's no doing anything, not blinking not thinking, not a thing... till you get water in your mouth to wet it. It's beyond dry, where you can't even close it because the tongue and entire mouth doesn't even feel real, it's worse than a mouth full of saw dust if that's imaginable.
I don't know enough about this Sjogren syndrome, but I'm wondering IF anything else causes EXTREME absence of saliva like this? I'll read today about this. I'm so sorry you're having this happen daily. Lets find something that can help...I'll read and see what I find.
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Post by toni on Jan 23, 2010 11:24:02 GMT -5
M, just off the bat here is something interesting because there's many other (problems) that too can cause dryness of the mouth. I know you said your eyes are dry too. I'm glad you're being tested for this, because there are many other "problems" that can cause the same symptoms. I don't have the dry eyes like you do, just my mouth, rarely. Look at this article, but I've just begun really...so I'll find more. Without knowing, right off, I'm feeling it's because of Morgs..(being that it's some kind of infection) from bacteria or virus or many pathogens causing this. From article: Some health conditions, along with the treatments for them, can cause dry mouth as one of their symptoms. These include Sjogren's syndrome, Parkinson's disease, diabetes, anxiety and depression disorders, bacterial and viral infections, HIV and AIDS. Mouth breathing and snoring may also cause dry mouth. www.ehow.com/about_5077376_causes-extreme-dry-mouth.htmlI'm just glad you'll know for sure by your tests.- because so many other things can cause the same thing too. When are you getting that done?
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Post by toni on Jan 23, 2010 11:27:05 GMT -5
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Post by toni on Jan 23, 2010 11:43:42 GMT -5
M, here's another very good article: www.merck.com/mmhe/sec08/ch111/ch111a.htmlThis talks about salivary glands being blocked and infection. Something I noticed last night (and maybe this will ring true in some way with you too, as I'm curious if we might have had the same experience) in some way. Yesterday or last night, did you eat anything at all that was really sour? Like a pickle or lemon? (just extremely curious). I had a RARE reaction last night myself at dinner time. Now, first off, I eat lemons like candy. So I'm not one to pucker much when I eat one of those with salt on it. I squeeze them on everything (that they'd taste good on) like salads, and well..taco's, and heck all kinds of foods and put them in club soda and even in my cranberry juice. (I like sour stuff) hahha can you tell? But..what happened at dinner (before bedtime) was something different. I had fish, so I was squeezing tons of limes all over it. I LOVE limes, so I took a wedge of it, and just bit into it. Well...I just about quivered myself to death...(which never happens). I felt "the most extreme" horrid sensations in my jaws (next to my ears) like one would get if they weren't use to eating lemons. But this was an extreme sensation. I thought that was SO weird, because I've not felt that feeling in forever. I'm thinking "possibly"...and it's just a thought, that maybe there's a bacteria "buildup" possibly that's occuring in the lymphs. Just like what it says in the articles. That "a blockage" can occur, and bacteria build up. I'm sure you're in tune with your body, which I sure am with mine, and immediately one will notice something VERY different when it is. And taking that bite of that lime wedge, has never sent me into orbit like it did in my lymph nodes last night...and then to have the SUPER dry mouth...I'm feeling there's a connection. Have you experienced that super tingly zinging or tightness like sensations "in the are of in front of your ears and inside the jaw right there" lately? Probably depending on what you're eating...would "bring it out moreso"...and you feel that "ultimate zinging" before you have the dry mouth happening in the night?
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Post by kmarie on Jan 23, 2010 12:39:51 GMT -5
I was tested 2x from two different labs
(NEGATIVE for sjogren's syndrome)
Also, I too have both dry eyes and mouth. Alot of people must have dry eyes since I see that commercial for "DRY EYE SYNDROME" on TV so often.
BTW, I hate that commercial cuz it only addresses taking care of the woman's symptoms and treating that symptom but does NOTHING to find out for her if she should see her regular MD to rule out anything else.
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Post by toni on Jan 23, 2010 12:53:05 GMT -5
Hi Kmarie ;D And thank you too for your post, because you being tested, helps "possibly" as I personally don't feel I have the S. Syndome, but moreso that it's "infection" traveling through sometimes, or...the immune is going through ups and downs basically. I've started Bactrim and I'll do that for week. Whether or not that's really what I should be doing, I just feel it's okay, since I only take a round of this every few months. Please look at this article, because it's also very infomative. Not that this is "why" for certain we have the dry mouth (and you and M) have the eyes too going on, but...it's a possibility? From article:
Salivary gland enlargement is also seen in auto-immune diseases, which cause significant inflammation. Patients often have a dry mouth or dry eyes.www.entassociates.com/salivary_glands.htm
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Post by kmarie on Jan 23, 2010 13:18:47 GMT -5
I have been seen by many doctors these past year and I NEVER EVER had inflammed glands/lymph nodes. I would even ask when they felt around my neck. Same with the under- arm nodes. Never had inflammation (from my own experience washing in the shower). I would have noticed if they were at all changed.
Though I have hypothyroid and recently had my synthriod increased, still my thyroid was never enlarged either.
All the numerous labs consistently show negative for any inflammatory problem. No rhumatoid (sp) factor and my sed rate is NORMAL. A high sed rate can mean alot of things and inflammation is one of them. I have always been normal my whole life. The only year that I skipped my "YEARLY LABS/Medical Routine Physical" was in 2006 due to the trauma of morgellons and lesions. But I did get my labs done due to the fact when I showed up in the ER with lesions, .................... They handcuffed me and took me to the psych ward. I NEVER said morgellons.
They drug tested me without my permission, it was negative in the ER. But when going over the meds I take regularly, I told them I take Klonipin for anxiety and have since I was 30 years old. (on and off).
After I got myself out of the psych ward the next morning, I went to medical records a few days later to get copies and my labs still showed a normal sed rate and NOTHING wrong except this time, my thyroid medication needed to be decreased. I noted a "Triangle" on the lab report from the ER NORMAL "no drugs in system" and asked what the triangle meant where the results should be.
The clerk said. "OH, That Means a CHANGE/CORRECTION Had Been Made". In other words, they saw my lesions on my arm, but with a normal urine drug screen they could not prove I was on "illegal" drugs... UNTIL, I told them that I take Klonipin (but obviously it was negative during the ER visit).... SO THEY CHANGED MY NORMAL DRUG SCREEN and stated it was POSITIVE for a benzodiazapam (sp). EVEN though I HAD a SCRIPT for it.
I was furious. I had been very careful while I was in the ER to prove I was not a harm to myself or others (which legally I think is the only way they can lock you up).
I hope whoever put the handcuffs on me now has morgellons.
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Post by kmarie on Jan 23, 2010 13:29:39 GMT -5
Mfromcanada, Do you know what your sed rate has been? Does it fluctuate at all? Sedimentation Rate The sedimentation rate (sed rate) blood test measures how quickly red blood cells (erythrocytes) settle in a test tube in one hour. The more red cells that fall to the bottom of the test tube in one hour, the higher the sed rate. When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer. There are many possible causes of a high sedimentation rate. For this reason, a sed rate is done with other tests to confirm a diagnosis. After a diagnosis has been made, a sed rate can be done to help check on the disease or see how well treatment is working. Why It Is Done A sedimentation rate (sed rate) test is done to:
Find out if inflammation is present. Check on the progress of a disease. See how well a treatment is working www.webmd.com/a-to-z-guides/sedimentation-rateBTW: my dry mouth is only occasional and not severe. I have had dry eyes since my 30's. That is when I started having trouble wearing contact lenses due to the dry eyes.
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Post by jeany on Jan 23, 2010 13:41:12 GMT -5
I have been seen by many doctors these past year and I NEVER EVER had inflammed glands/lymph nodes. I would even ask when they felt around my neck. Same with the under- arm nodes. Never had inflammation (from my own experience washing in the shower). I would have noticed if they were at all changed. Though I have hypothyroid and recently had my synthriod increased, still my thyroid was never enlarged either. All the numerous labs consistently show negative for any inflammatory problem. No rhumatoid (sp) factor and my sed rate is NORMAL. A high sed rate can mean alot of things and inflammation is one of them. I have always been normal my whole life. The only year that I skipped my "YEARLY LABS/Medical Routine Physical" was in 2006 due to the trauma of morgellons and lesions. But I did get my labs done due to the fact when I showed up in the ER with lesions, .................... They handcuffed me and took me to the psych ward. I NEVER said morgellons. They drug tested me without my permission, it was negative in the ER. But when going over the meds I take regularly, I told them I take Klonipin for anxiety and have since I was 30 years old. (on and off). After I got myself out of the psych ward the next morning, I went to medical records a few days later to get copies and my labs still showed a normal sed rate and NOTHING wrong except this time, my thyroid medication needed to be decreased. I noted a "Triangle" on the lab report from the ER NORMAL "no drugs in system" and asked what the triangle meant where the results should be. The clerk said. "OH, That Means a CHANGE/CORRECTION Had Been Made". In other words, they saw my lesions on my arm, but with a normal urine drug screen they could not prove I was on "illegal" drugs... UNTIL, I told them that I take Klonipin (but obviously it was negative during the ER visit).... SO THEY CHANGED MY NORMAL DRUG SCREEN and stated it was POSITIVE for a benzodiazapam (sp). EVEN though I HAD a SCRIPT for it. I was furious. I had been very careful while I was in the ER to prove I was not a harm to myself or others (which legally I think is the only way they can lock you up). I hope whoever put the handcuffs on me now has morgellons.Hi Kmarie, this is unbelievable how you guys are treated. It reminded sort of what ppy18 told, too. Is it a normal procedure to lock people up, out of nothing (without psych.med./proof of drug abuse/mental illness etc.) in the USA?..just wondering.. If it would be me, I would def. sue them!...med.malpractice.. deprivation of liberty..etc. Jeany
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Post by toni on Jan 23, 2010 13:54:51 GMT -5
Kmarie,
Same here. Never have had inflamed lymphs. Yet yesterday, taking a bit of that lime, I got that tightness or zing in the jaw lymphs like I was electrocuted. I don't get it...that's a fact.
And the "horror event" you went through, I TOO hope they have a CASE of Morgs for treating you like that. To go for help and be treated worse than an animal is allowed to be treated in this country is absolutely criminal! I'm so sorry.
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Post by mfromcanada on Jan 23, 2010 14:50:04 GMT -5
no positive result from sed rate test here. I have been tested for RF and ANA and no positive result but this time doctor has ordered another test. Apparently there are glands in front of the ears that can become enlarged but mine are not. I litterally do no go anywhere without water as I am afraid of getting into a pickle. One day I could not see well enough to write. Personally I do not believe that our bodies are trying to kill anything but pathogens and contamination and the doctors can't see that so they just say you have autoimmune disease. No such thing, my body is trying to rid me of morgellons and in my mouth it is trying to do what ever my body can to rid me of morgellons. I just wish the doctors would actually realize that if any of us have this syndtome we got if from morgellons not the other way around. My opinion only.
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Post by kmarie on Jan 23, 2010 15:11:45 GMT -5
Mfromcanada,
Me too, negative 2x for ANA and RF and all the tissue "syndromes". I also had a Paraneoplastic test (very expensive) that searches out tumors before they can be seen on MRI's which was negative.
But then, it was performed by Mayo Clinic and I have not much confidence in their lab and they refuse to give you the values on any of the test they run. Sometimes it's nice to know if you are a HIGH normal or LOW normal. But they just report Positive or Negative only.
They tested me for Lyme and said negative (they use a computer to read the results).
Then I had it done at Igenix, (read by humans) and was positive Lyme and two co-infections.
I also do not like the way Mayo gives information about morgellons on their website. I have heard of numerous people with morgellons who went to the Mayo Clinic and were treated very poorly.
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Post by toni on Jan 23, 2010 15:16:23 GMT -5
M, I agree with every word you just said.
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Post by ibzahp on Jan 23, 2010 19:35:20 GMT -5
MF I was dx'ed w/Sjogrens about 20 years ago by a rheumatologist (my apologies for spelling). I don't know if he did a blood test or not. I do remember very dry eyes and mouth. Was anyone else also dxed w/this?
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Post by ibzahp on Jan 23, 2010 19:46:49 GMT -5
Also Kmarie, I was thinking of going to Mayo as it is one of the only "high reputation clinics around that takes medicare. I am rethinking that now.
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Post by chaosonline on Jan 24, 2010 3:56:21 GMT -5
I was diagnosed with sjogren's syndrome at the University of Michigan in 2006. I never believed it for a minute but felt it was a cover for not looking into what my real problem was and the was full blown Lyme Disease.
I could barely move any joint in my body and I could not walk at all was in extreme pain in my knees, horrible, unbearable, debilitating muscle cramps. I even fell off of the examining table and the doc fell when she tried to catch me! These muscle cramps were in entire sections of my body all at once. They would be in my toes, feet backs of my lower and upper legs and up into my chest! At times I thought my heart would burst from the pressure. I had never before experienced charlie horses in my chest. It was these unrelenting muscle spasms that made me realize I had something really seriously wrong. But after 10 days in the hospital all I was told was "sjogren's syndrome"!
Karen
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