Author Topic: Rheum. says Sjogrens is NOT a Systemic Disease!  (Read 2011 times)

mamak

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Rheum. says Sjogrens is NOT a Systemic Disease!
« on: May 04, 2011, 06:55:39 PM »
Hi Everyone,

I tested positive for SSB and ANA last year after trying to figure out the cause of my swollen lymph nodes and salivary glands. Today I had an appt. with my second rheum. due to some crazy Blood Pressure and Heart Rate issues and other symptoms of autonomic neuropathy during a flare-up. She told me point blank that, "Sjogrens does not affect the nervous system. It is NOT a systemic disease. You do not have lupus."  Now, call me crazy, but hasn't the medical community known for at least a decade that Sjogrens is in fact a systemic disease and it can affect practically everything?!

I am a new member and any comments would be greatly appreciated!

-MamaK, 37 yo mom of two

Nancy60

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #1 on: May 04, 2011, 07:09:40 PM »
Yes, it is well documented that it can be a systemic disease and can effect the nervous system.  If you are having symptoms your doctor needs to determine if they are coming from Sjogren's or something else.  I would not be going back to see any Rheumy that believed that about Sjogren's.  Have you seen a Neurologist about you neurologic symptoms? Talk to your PCP about what is going on to see if he/she can recommend a different Rheumy and a Neurologist.  You might also want to check out the Sjogrens Foundation or the Lupus Foundation to find a doctor in your area.

Nancy


mamak

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #2 on: May 04, 2011, 07:18:24 PM »
Thanks Nancy! It just floors me that people who call themselves rheumatologists can say these things to people. I am actually a healthcare professional myself so I know a good amount about some of this stuff and feel very sorry for those who believe their doctor's words and stop there. I am going to go to an actual Sjogrens Center next. Some of the ones I have researched will schedule you to see one of their neurologists so I am going to do that. I am frankly tired of dealing with people who don't know what sjogrens is. I will share any valuable info. I find out that can help others in this situation.

Scottietottie

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #3 on: May 04, 2011, 07:45:44 PM »
Hi Mamak  :)

it is possible for Sjogren's not to be systemic but in many - it is. The symptoms that you describe would certainly suggest 'systemic'. Can you see another rheumy?

Take care - Scottie  :)
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ohiolady

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #4 on: May 04, 2011, 08:03:17 PM »
MamaK,

Count me in as one of those who has experienced the Autonomic Neuropathy symptoms.  My symptoms have been more stable for the last 9 months but for 3 years I had quite a time with dropping BP and heart rate issues.  I'm glad you are pursuing someone who will take you seriously.  It can be very frustrating.

Good Luck.

Anna
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Joe S.

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #5 on: May 04, 2011, 08:04:07 PM »
Some people go to school to get a piece of paper. They study for the test and then forget what they studied. When they finish school they no longer keep up on their industry. I have seen a lot of this behavior in the computer industry.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Meld256

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #6 on: May 04, 2011, 10:12:58 PM »
If this rheumy insists that Sjogren's is NOT systemic, they are very mistaken.  Many documented cases that it does not always cause systemic issues with everyone, but it CAN with some of us, too.  So, she doesn't know what she talking about!   ???

I would see another rheumy who will look at your issues more seriously and the reasons you have them. Sounds like a good idea that you're going to a Sjogren's Center. Please let us know what happens, and take care.
Melinda
57, female, Sjogren's dx 09/2010, Fibromyalgia and CFS dx 04/2009, meds: Savella, trazodone, Relafen, Plaquenil, Restasis, FreshKote eye drops, Bepreve drops, Optive Refresh, Biotene OTC products, retired/SS 12/2010

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Woolygimp

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #7 on: May 04, 2011, 10:18:37 PM »
Sjogren's is systemic.  It can affect your muscles, joints, central nervous system, skin, and brain.

I know because not only is it documented, but it was affecting everything in me.

irish

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #8 on: May 04, 2011, 11:07:39 PM »
Sjogrens affects the nervous system and if you go to the sections listed on the home page you will see the section called "articles". There are many articles there that might come in handy for you to print off and take to your doc.

Also, the sjogrens affects the stomach, pancreas, liver, gallbladder and lungs. I probably misses a couple this late at night but you get the point. It is not just the dryness of the eyes and mouth and he has not kept up with his learning.

The sjogrens has been deemed in the past 5 years or so to have many more problems than first thought and the drug of choice is plaquenil and it is to be started as soon as possible to slow the progression of the disease and help eradicate ot cun down on some of the symptoms.

A new doc does sound like a good idea for you. Good luck. Irish ;D

Also, sjogrens and lupus are extremely hard to differentiate and diagnose. Lupus is not cut and dried and neither is sjogrens.

Billydude

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #9 on: May 05, 2011, 12:31:43 AM »
I go to one of the top rhumatologists that specialize in Sjogrens (and speaks at Sjogrens conferences and wrote a book about Sjogrens ) and she says that its definately systemic and effecting my nervous system.   

dante

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #10 on: May 05, 2011, 12:41:06 AM »
Hello MamaK
  I'm also new here and have found this forum to be help...I have never heard of a Sjogrens center...how would I go about finding one out...I have not truely been dx with it yet, but, all signs point to it...I feel that lupus is a chance that I might have too...like Irish said, they are hard to figure out...I hope I get answers out like you

mamak

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #11 on: May 05, 2011, 04:58:49 AM »
If you google, "Sjogrens Center" there are a few big ones that come up. One in particular I know about is at Johns Hopkins in Baltimore, MD.

Thank you to everyone who has commented so far. It helps so much to be reassured that there are others who have gone through the same things.  :)


gurs

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #12 on: May 05, 2011, 06:30:14 AM »
Bottom line..find a new rheumy quick.

gursie
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dbab

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #13 on: May 05, 2011, 09:34:18 AM »
Do me a favor... on the way to your new doctor  ;)  ... print off and drop this bit of info to your (soon-to-be) old doctor so you can EDUCATE them!

From the Sjogren's Foundation Website http://www.sjogrens.org/home/about-sjogrens-syndrome

Quote
Although the hallmark symptoms are dry eyes and dry mouth, Sj?gren?s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

Quote
All instances of Sj?gren?s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important ? they may prevent serious complications and greatly improve a patient?s quality of life.

rnathans

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Re: Rheum. says Sjogrens is NOT a Systemic Disease!
« Reply #14 on: May 05, 2011, 02:43:24 PM »
Sounds like you need a new rheumy and a neurologist. I cannot tell you how many times my hubby, who is a neurologist, has diagnosed Sjogrens after a rheumy has not. It is amazing how may they us think it is just dry eyes and mouth. I also have to say that it was a neuro ( not my husband-he will not treat his own family) who first suggested that my problems could be Sjogrens.