Author Topic: Brand new to this place!  (Read 1824 times)

jmkboyer

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Brand new to this place!
« on: July 24, 2011, 05:41:19 PM »
Hi soon-to-be friends,

I don't have an official Sjogren's diagnosis yet but I'm absolutely positive it's what I have.  I haven't had a chance to have much discussion with my rheumy this summer (young kids out of school...no way am I subjecting my poor doctor to them) but I have done enough research, and collected enough information, that I know he'll agree.  Unfortunately my most recent blood test showed my SSA and SSB to be normal.  Nothing's every easy!

I started this journey with a nasty car accident in April of 2010.  Up until that point I'd been completely healthy.  I was seemingly uninjured thank goodness, but in June I started having GI issues.  And in August I completely fell apart.  The exhaustion, joint pain, and tremors were ridiculous.  I saw a neurologist, endocrinologist, and gastroenterologist among others.  Finally my GP did a "catch-all" blood draw and my ANA came up super high.  Later, I had the IgG in a celiac panel show elevated (and I'm positive it's not celiac.)  In the past 3 months, the dryness has really intensified.  As I look back, it's been slowly getting worse but it was never enough for me to notice a big change. Now, I feel like I used to when I was 18 and left my contacts in for 48 hours.  And I'm on the verge of having to quit my church choir because the throat dryness is so awful.  I'm on the upswing of a flare right now (it started when I had to go visit my mother on "vacation"--go figure) so I've got a little moisture back in my eyes but the exhaustion and joint/nerve pain never seem to go away.

So I hope you all can accept me even though I don't have the official rheumy stamp of approval.  Yet.  He and I are going to sit down and have a long talk once the kiddos head back to school and I get a little quiet back in my life.  He's a good man, although young, and I know once I present the evidence he won't be able to disagree.

Thanks for being here--

MB


Pisces24

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Re: Brand new to this place!
« Reply #1 on: July 24, 2011, 06:12:09 PM »
Welcome!   Getting the "Official Stamp of Approval" can take some time. I took me 6 yrs and I am SS-A & SS-B high. My ANA is so high, they quit counting.  ::) I do not think doctors really understand autoimmunology as it is very hard to get a firm diagnosis. You can test negative (called sero-negative) and still have it. There are a bunch of others that fit that on this board.

Yes this disease seems to creep up on you. You get soo used to the symptoms that you just ignore it until it gets bad enough or your dr gets upset. My journey started because my blood work got soo off my gp was bound and determined to find out what was causing it. I had problems but had them so long they were "normal".  ::)

I have all my -ologists at a reasearch/teaching hospital here and I suggest one of those if you have one nearby over any individual specialist. My immunologist there suggested I do sinus rinses (Netti Pot) which  really really helped cut down on the severity and # of sinus/throat infections I was getting. Basically you squirt a mixture of distilled water and sea salt in your nose - there are kits at the drugstores.

You will find a lot info here but remember that Sjogrens is very individulized. There are symptoms associated with it but they vary on the # and severity with everyone. You will find we are all good here and not judgmental.  We've all been there.  Welcome.

Joe S.

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Re: Brand new to this place!
« Reply #2 on: July 24, 2011, 06:41:18 PM »
Welcome
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

season

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Re: Brand new to this place!
« Reply #3 on: July 24, 2011, 09:20:25 PM »
Hello. You are in a good place to find a lot of helpful info.

Patze

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Re: Brand new to this place!
« Reply #4 on: July 25, 2011, 04:46:14 AM »
Hi MB!

Let me also welcome to the SJS World and family! 

Please look around the board as there are scads of topics to be perused by using the search engine located in the upper left hand side of the board.  If you can't find what your looking for there, don't be shy and ask aways as there is usually someone about that might be able to help.

I hope that you find this board as friendly and useful as I have.

Take care of yourself -

Patze
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Sero Negative Queen

lynnmarie219

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Re: Brand new to this place!
« Reply #5 on: July 25, 2011, 08:21:48 PM »
Hi MB and welcome to Sjogrens World!

As has been said already it is possible to test negative in your labs and still be diagnosed on your symptoms alone in order to receive treatment that is helpful to you.

You did mention that your ANA was very high when tested...so that alone shows them that something autoimmune is going on even if they cant narrow it down right now at this point to an exact diagnosis!

Take all of the time you need to read all you can here and ask any questions that you have...you will find there are many kind and caring people on these boards and you will find comfort, support and acceptance here!

Jozee

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Re: Brand new to this place!
« Reply #6 on: July 25, 2011, 10:33:34 PM »
Welcome!

You're gonna love it here!

Meld256

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Re: Brand new to this place!
« Reply #7 on: July 26, 2011, 06:07:22 AM »
Welcome, jmkboyer!  :D

You don't need an Approval Stamp to be considered part of our Sjogren's family.  Many here don't have an official diagnosis or are in the middle of trying to get one.

I am one of those diagnosed on symptoms alone-I've got the "laundry list".  To look at my blood work, it show's I'm a 55-year-old woman in excellent health!  :o

As others have stated, there is loads of info. here and warm and caring people.  We encourage, support and care for one another.  Welcome to our group; I think you'll find it very helpful. Please post any questions or concerns you have at any time; we understand.
Please take care,
Melinda