Author Topic: Recently Diagnosed with Sjogrens Syndrome  (Read 3556 times)

ezbrunette90

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Recently Diagnosed with Sjogrens Syndrome
« on: February 26, 2014, 05:55:59 AM »
Hi All my name is Ezza I am 24 years old and i have recently been diagnosed with Sjogrens Syndrome 22nd Feb 2014. For me this is a big positive and a huge relief as i have been suffering symptoms for many years and I put it down to being on antidepressant medication or it was just my body being itself. It has taken me 2.5 years and 6 doctors the 6th doctor being the youngest and by far the best as she was able to help me on my second visit to her she had an answer. The Doctor told me my ANA test had been abnormal and inconsistent since 2010. I was so pleased I finally had a Doctor listening to me. I felt other Doctors didn't listen as I have bipolar so they thought it must be "in my head". I found out last year when i was pregnant  that one of my cousins on my dad's side has  so it inspired me to research auto immune diseases. I guess I have a few questions today firstly being diagnosis were any people here diagnosed on the spot without your rheumatologist doing any tests? Mine just went off the Ana results from my doctor he also felt my muscle points(which i know they do to test for fibromyalgia) he then asked to look under my tongue and felt my glands. I have been prescribed Plaquenil and started it on the 26.2.14 i find the only side effect i have so far is passing alot of wind.

My next question is does Sjogrens affect the menstrual cycle?

My last question would be does Sjogrens affect pregnancy?

finallyadx

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #1 on: February 26, 2014, 06:34:33 AM »
Hello Ezza and welcome to the board.  You will find it informative and the members to be very supportive.  People come here to vent and share thoughts and experiences.  I share your sentiment - being diagnosed was part of the battle for me and a relief in a sense as well as my health had been steadily declining.  I am sorry that many of the drs felt it was all "in your head" - I had a similiar experience as well as I suffer from anxiety (since the death of my mother in January of 2012).  It took my switching drs twice before I found the third - third time is a charm!

I was diagnosed based on the ANA and then positive SSA/B.  Finding a great dr, one who listens and believes in you and one who will start trying treatment options is part of the battle.

I had several miscarriages before being diagnosed - no-one is willing to say sjogrens had anything to do with it but in the back of my mind, I wonder.  There is something called heart block that a fetus can suffer with a mom who has sjogrens but if your dr knows that you have sjogrens they can monitor you closely. 

Plaquenil can cause some GI distress, try taking it with a meal. 

As far as sjogrens affecting the menstrual cycle - I am not certain about that but hopefully others will chime in on that aspect.

Keep us posted.
Sending positive thoughts and prayers your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Carolina

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #2 on: February 26, 2014, 09:00:30 AM »
Hello and welcome ezbrunette,

It has been a long journey to get to a diagnosis.  Part of the reason is no doubt your age, since the majority of those diagnosed with Sjogren's are much older.

However, it isn't at all uncommon to take a long time to get a diagnosis.  And it is not at all unusual to be diagnosed on symptoms, rather than tests.

As my immunologist says: We use the tests we have, not the tests we need. And we really don't know if the blood in test tubes really reacts the way it does in your body.  The immune system is complicated and we do not know as much as we'd like about how it works.

It will be interesting to see if the Plaquenil begins to make a difference.  I understand that it takes time.

Welcome again ezbrunette

Hugs, Elaine (aka Carolina cause I live in North Carolina).
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desi_20

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #3 on: February 26, 2014, 12:57:05 PM »
I was also told my symptoms were all in my head because I have anxiety, so I understand all the frustration. I was diagnosed at my second appointment with rheumy after he did bloodwork, at my first appointment he said something was definitely wrong and he that he thought it could be sjogrens or lupus.

Sjogrens can cause fetal heart block during pregnancy. My rheumy told me any pregnancies would need to monitored closely but that it is very possible to have a successful pregnancy.

I'm not sure if it can affect the menstrual cycle. I should probably know though since I'm a young woman myself (I'm 21).

Pisces24

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #4 on: February 26, 2014, 05:39:58 PM »
With me it was numerous sinus infections, couldn't wear contacts anymore and white cells slowly climbing.  It took me 3 years of specialist to "so called" specialists before I was diagnosed by an immunologist at a teaching hospital.  My blood test was really really positive as I had a high ANA and high SS-A and SS-B (almost off the chart) the clinched it was Sjogrens.

So far, Sjogrens has been pretty good to me compared to others here. I use the netti-pot and rinse so it cut down a lot on the sinus infections. I am in my 50s now. My Sjogrens mostly affected my teeth as I am at the point of deciding on implants or dentures. Sad considering I had perfect teeth up until 10 yrs ago.   :( :'(

Hey my favorite most strange thing a "so called specialist" told me before I got diagnosed was [ maybe it is the cat's fault". ]  :D :D I just got a cat then but didn't have a cat before the whole thing started period.  You don't have to be bipolar to have a dr tell you you are crazy when you KNOW somthing it wrong with your body.  We've pretty much all gone through that.

cccourt1942

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #5 on: February 26, 2014, 06:31:14 PM »
Oh Pisces-----------I want to say: You have to be kidding.  But I know you aren't.  So...I think you should start a thread for the craziest things doctors have said to us.  AND...I am suggesting if the thread lasts...oh let's say a year....that at the end of all the replies YOURS will still be the wackiest.  Naturally crazy doctors only see crazy!  Honestly.  If it weren't so funny, it would scare the dickens out of me. I take that back.  It DOES scare the dickens out of me.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Bucky

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #6 on: February 26, 2014, 07:53:41 PM »
Hi Ezza - welcome!

I have been prescribed Plaquenil and started it on the 26.2.14 i find the only side effect i have so far is passing alot of wind.

You will find that medicines affect different people, different ways.  For myself, I found that when I take Plaquenil with milk (in the morning for breakfast) that I have a lot of gassiness.  If I take it without milk, I'm fine.  There have been other members on this forum that said the same thing, that milk w/Plaquenil caused them gassiness.  It's kinda of odd, as on the directions it says to be taken with milk or food.  I just know what works for me.

There is a wealth of information here on the forum.  If there is a specific topic you are interested in, if you put that word(s) in the subject box to the top right of this page, it will take you to previous threads about that topic.  Of course, by all means, you can start your own thread.

We're a very diverse group here . . we range in age from teenagers to people into their 80's and everywhere in between.  With this forum, it's nice to be able to relate to others who share the daily challenges of having an autoimmune disease called Sjogren's Syndrome. 

There are several helpful books on the market about Sjogren's Syndrome too.

Again, welcome . . I hope you find this site helpful to you on your Sjogren's journey . . . when you come here, please know that "we get it"!   ;)

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

grammad97

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #7 on: February 26, 2014, 08:55:55 PM »
Hello ezbrunette-
Welcome.
I am amazed at how many young people are on this site. I just cannot imagine being so young with all the crazy symptoms of autoimmune disorders.
I know how difficult it was for me to get a doctor to take me seriously and treat my symptoms.
I got diagnosed by doctor #2 but I have had 4 more rheumatologists since him.
Some drs treat symptoms and some don't.
I think you are fortunate to have a good Dr.who is working with you.
I don't have any info for you regarding pregnancy or menstrual cycles as my pregnancies were in the 70's and my parts were removed when I was 40. I did suffer with endometriosis though.
We have a nice bunch of people here so I know you will hear how sjogrens effects them.
I have been on plaquenil a long time and I know it has helped quite a lot.
Take care and let us know how you are doing.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

Pisces24

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #8 on: February 28, 2014, 09:58:45 AM »
ccccourt - I even had a "so called specialist" tell me when I was trying to get a diagnosis that he though it might be cancer but DARN I just wasn't sick enough.  Excuuuuuuuuuuse Me!  ??? ::)

cccourt1942

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #9 on: February 28, 2014, 11:40:36 AM »
Pisces:  About 20 years ago I had lost a great deal of weight between yearly gynecology appointments.  I weighed, peed, and sat in "the" room.  The doctor walks in and her face is looking at my medical folder.  She reads some more, finally looks up at me and comments that I lost a lot of weight.  I asked her what would cause that.  ONE WORD ANSWER:  "Cancer."  Then she asked me to get up on "the" table.  Not one more word.  Not any concern.  Nothing.  I never saw her again. 
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Carolina

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Re: Recently Diagnosed with Sjogrens Syndrome
« Reply #10 on: February 28, 2014, 11:52:56 AM »
Yes, ccourt, some doctors are resigning.....they just have weird ways of doing it.

Glad you made the resignation permanent.

Hugs,  Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-