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Old 03-11-2012, 09:42 PM   #16
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!

Panic attacks are bad. I can't figure out when they're going to happen half the time, and if I wake up in one, I know it's going to be awhile. I saw somebody on a Doctor show (I think it was Oz but I'll deny it if asked ). But coming from somebody who obviously has nothing wrong with him other than his deeply-rooted need for a lot of television time and useless information, I tend to side with those who think he is a quack. Try explaining a panic attack to some young nurse who knows everythiing - just for the sheer frustration. She actually got a co-hort to come in and explain to me that if I was crying, I was exacerbating the muscles in my chest. Big freaking deal huh? You'll love this: They were treating me like I was in L&D and trying to get me to breathe through a contraction. Idiots! I take them very seriously. I don't need Lamaze breathing, I know somebody who understands the nature of pain, how the pain owns everything about you, how it doesn't want to calm down, it literally owns you and how long it will last is anybody's guess. Well, my name is Lisa and I'm in the Austin Area NorthWest

 
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Old 03-11-2012, 10:02 PM   #17
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Re: !

I thought I was going nuts for so long but never knew why it eventually got better after hormonal changes would settle down (periods, PMS, menopause etc). I also think my gall bladder went south due to the bad inflammation that lasted nearly 7 years with no pain at all until the stupid thing was ready to rupture. I've had every goofy thing happen to me you could think of to name. I think nearly all of it relates to AI/possible Sjogren's. I reside north of Tulsa. I'm also pooped from a long day.

Last edited by moderator2; 03-12-2012 at 05:39 AM.

 
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Old 03-11-2012, 10:13 PM   #18
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Re: Finding a Sjogren's Specialist

there's panic in sjogrens, there's panic in the loss of a loved one, there's panic when anything happens that you have no control over, but try to control it. panic happens when we can't tolerate what is going on in our bodies and minds. as for pain with autoimmune disorders of any kind...one thing you have to remember....stress causes inflammation and when we stress we make ourselves sicker. the idea is to try...and trust me...i for one know how hard that is....but we must try to reason with ourselves, try to stay calm, and try to realize that the stress will make me worse. so....i'm going to try and not worry and just work on making my best days better and my worse days tolerable. there's a program that is going to be available online for one week starting march 14. each program is available for 23 hours a day. it's called Qigong. i'm going to try it. it's kind of like yoga....but teaches you how to heal your body. it's being introduced by a company called peak potentials. by the way...it's pronounced chi-gong. might not hurt to look it up. i'm off to bed. sweet dreams.

 
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Old 03-11-2012, 10:19 PM   #19
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Re: Finding a Sjogren's Specialist

Sleep well. . .

 
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Old 12-19-2012, 08:03 PM   #20
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Re: Finding a Sjogren's Specialist

Hi there Boo, I live in Brampton, Ontario. Would you please pass me the name of the internist that specializes in autoimmune disease.? I would greatly appreciate it.

 
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Old 12-19-2012, 08:19 PM   #21
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Re: Finding a Sjogren's Specialist

Sky, I don't know how it works in CAN, in the US, at least in my experience, with our wonderful system of managed medicine, we can only see specialists - love that extra specialist co-pay. So my internist turned me over to a Rheumatologist. He's cute and he genuinely seems to care. He's young, he'll be jaded soon enough. I don't know of any Sjogren's Specialist. As it takes, on average, six years for a Dx, and I only self Dx'd myself after watching "Mystery Diagnosis", that's when I demanded the test, they can only manage the symptoms. It's not like Lyme that will go away after extended periods of antibiotics. If you haven't got the pain or the panic attacks, consider yourself a very mild case. I found that reducing the iron, despite anemia, helped immensely with pain, the only thing for Fatigue is Amphetamines/Adderall, the only thing for dryness is Evoxac, and the only thing for the rest of the pain is pain management (meds). It is a little disconcerting walking into the pharmacy with five C2 prescription forms, I always get that little eyebrow raise they do subconsciously like (whoa! is this chick dying or what?) Still waiting for the big M at 53 - will it ever happen??? Hope you get some relief Boo hasn't posted since march, hopefully she'll get a note that you responded since you two are geographically close. Lucky!!

Lisa

 
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Old 12-21-2012, 09:46 AM   #22
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Re: Finding a Sjogren's Specialist

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Originally Posted by skyisfalling View Post
Hi there Boo, I live in Brampton, Ontario. Would you please pass me the name of the internist that specializes in autoimmune disease.? I would greatly appreciate it.
when i was in london i was seeing Dr K. Myers. She's an internist and her offices are based at st. josephs hospital. nice lady and very informative. she will do full bloodwork and look for all symptoms. i've moved back home now, so i'm slowly building up my crew of specialists again, but still can't find a family physician and the clinics will only treat the main symptom that is your worst complaint. don't even know why they opened so many of these clinics and now they only want one hospital. geesh! all the best to you. oh...and you will need a referral from you gp to see her.

 
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Old 12-21-2012, 11:01 AM   #23
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Re: Finding a Sjogren's Specialist

There's always the *chance* that as with other AI disorders, this will go into remission. I haven't met any Sjogren's sufferer who's experienced remission, but it's that hope that keeps me going. It's both amazing and appalling how science works. They're working on an artificial pancreas but still can't cure Diabetes. Merry Christmas y'all. Here's hoping for a much better New Year

 
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Old 12-30-2012, 11:36 AM   #24
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Re: Finding a Sjogren's Specialist

Chame, would you mind providing the name of the rheumatologist that you see in Austin?

Hope you all have been feeling alright and the holidays haven't been too stressful...take care.

Last edited by maiyen; 12-30-2012 at 11:37 AM.

 
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Old 12-30-2012, 06:32 PM   #25
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Re: Finding a Sjogren's Specialist

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Originally Posted by chame View Post
There's always the *chance* that as with other AI disorders, this will go into remission. I haven't met any Sjogren's sufferer who's experienced remission, but it's that hope that keeps me going. It's both amazing and appalling how science works. They're working on an artificial pancreas but still can't cure Diabetes. Merry Christmas y'all. Here's hoping for a much better New Year
hey chame,
here in canada, they have developed a vaccine that actually cures sjogren's in mice. It is the combined efforts of the UHN( University of Toronto, Sick Children's, Toronto Western,and St Micheal's) teaching hospitals and uni's. It is only the funding that is preventing this from entering the human phase clinical trials. Sad isn't it?

 
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Old 12-30-2012, 06:50 PM   #26
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Re: Finding a Sjogren's Specialist

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Originally Posted by chame View Post
There's always the *chance* that as with other AI disorders, this will go into remission. I haven't met any Sjogren's sufferer who's experienced remission, but it's that hope that keeps me going. It's both amazing and appalling how science works. They're working on an artificial pancreas but still can't cure Diabetes. Merry Christmas y'all. Here's hoping for a much better New Year
Chame, I'm the same way. You probably already know this, but here in Canada, actually the City of Toronto, the UHN ( which comprises teaching hospitals and universities) have actually completely cured Sjogren's in mice. The only thing preventing this compound from advancing to human clinical trial is funding. How sad is that. I'm trying to bring this to the attention of Venus Williams, and Stephen McPhail, both athletes affected by this disease, in hopes that they will pool together and help raise some money for this vaccine to be studied in humans. This however, along with the work of Dr Faustmun, looks pretty promising. It is of recent scientific opinion that Sjogren's is actually the lynchpin of all autoimmune disease. This is pushing it into the research spotlight. LETS KEEP OUR FINGERS CROSSED.

 
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Old 03-29-2014, 07:04 AM   #27
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Re: Finding a Sjogren's Specialist

I'm hoping someone still reads this thread. I'm in a very bad way and I need a rheumotogist who will actually treat my Sjogren;s and Raynauds.
He'd never heard of CREST and laughed me off. He said I don't have Lupus because I don't test positive for it. The septum of my nose deviated by itself--no accident or injury, and he said he knew of nothing that would cause THAT to happen or the pain everyday.

Connective tissue disorder?

Can't get an answer to what would be THYRIOD problems--except, again, I test in high or low normal ranges.

I need a real doctor in Long Island, NY.

 
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