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Yet another diagnosis


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#1 MaryFanPhilly

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Posted 07 February 2009 - 02:55 AM

Hey Guys,

Well, just when you think you've seen it all.... I just feel like ranting a bit if anyone feels like listening.

Around the holidays I noticed some swelling in my right cheek, from in front of my ear down to my neck. At first I thought it might be a dental or TMJ issue, but my trusty dentist friend told me it was my parotid gland that was swollen, and perhaps I had a blockage. It was a little painful, mostly a feeling of fullness, and some discomfort swallowing on that side. Not serious but I figured it should be checked.

Off to the primary doctor, who gave me an antibiotic and said call if it didn't help.

Well, it didn't help. Then off to the ENT to check the paroitid. ENT says, hm, lets do an MRI maybe that'll show what is going on.

One MRI later the parotid looks okay - still swollen but no blockage but there was a nodule on the thyroid. What??!!

As it happens, I had an appointment with the endocrinologist for a routine check on the diabetes. I mentioned the nodule, she ordered an ultrasound. She could feel the nodule ON THE LEFT when she felt the thyroid.

In the meantime, back to the ENT to check the rascally parotid. Bo blockage but apparently Sjogren's can cause inflammation of the salivary glands, just so you know. Yay. At least we got that one figured out. He looked at the MRI and said, oh, there's the nodule, on the right, pressing on your windpipe. I said, um, no, it's on the left? The endocrine doctor felt it! Nah, it's there on the right says he.

Ok, now to the ultrasound. At least there are no needles involved, always a good thing.

As you might have figured out by now, there was more than one nodule. In fact a whole bunch of them, I stopped counting when he got to six. Two big ones, one on the left that the endocrine doctor felt, and one on the right that is pressing on the windpipe. Nearly 2 cm each.

Now I know why the swallowing issue. And why I've had a cough without a cold. And why my voice is hoarse. All of these things I have attributed to the GERD or the swollen parotid.

And the endocrine doctor is now ordering a thyroid panel and talking about yet another autoimmune disease, Hashimoto's thyroid. And a biopsy of the two bigger nodules, and perhaps a partial or full thyroidectomy.

The symptoms of Hashimoto's are fatigue, feeling lousy, feeling cold, weight gain. Having sclero and being on prednisone? Fatigue, feeling lousy, feeling cold, weight gain.

I guess there's a lesson here, somewhere. You never know what's going to relate to what. I'm glad I got the parotid checked out, and that my doctors are so thorough or who know when or even if they would have found this, especially if I had continued to ignore the swallowing, coughing and hoarseness.

The good news is, everything is totally treatable. We will have to discuss surgery when we get all the results in, but I am in no hurry and want to make sure my rheumatologist is on board with all this, he's the one specialist I haven't seen yet. He is anti-surgery generally so his input is very important to me.

I had read that once you have an autoimmune you are more likely to develop another one. Guess that is true at least in my case. So, folks, be vigilant with any new or different symptoms that might pop up.
I'll keep ya posted but I'm taking a break for a couple weeks and visiting friends out in sunny California. My thyroid nodules can stay where they are for the time being but they'd better behave.

Stay warm and have a good weekend!

Love,

Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#2 Jeannie McClelland

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Posted 07 February 2009 - 04:00 AM

Hey Mary!

Oh my, you do like to do it up right, don't you?!

I'm sorry to hear the latest, but really glad you shared it. I think we all start ignoring things after a while. "Oh, that's just a sclero thing~" Uh huh, pay attention, Folks, your body may be telling you something. (In my case, I hope it is singing "you're so pretty, you're so pretty, you're such a pretty girl" in perfect tune, of course! :lol: )

Have wonderful break in the sun and let us know how you get on when you get back, won't you?

Warm wishes,
Jeannie McClelland
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#3 janey

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Posted 07 February 2009 - 05:12 AM

Bummer! So sorry to hear about YET another diagnosis. Just glad that they did find the cause of some of your symptoms and didn't just blame it on sclero. You're right about us being more prone to other autoimmune diseases. I found this abstract on our autoimmunity page:

POLYAUTOIMMUNITY IN PATIENTS WITH SYSTEMIC SCLEROSIS. The first, second and third most frequent Autoimmune Disease encountered were autoimmune thyroid disease, Sjögren’s syndrome and primary biliary cirrhosis. Very interesting! Looks like you could have been part of this study.

Have a relaxing break and please check in and keep us up on how you're doing.

Big Hugs,
Janey Willis
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#4 razz

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Posted 07 February 2009 - 08:51 AM

MaryFanPhilly,

Jeepers, I can understand your frustration! Nothing is ever cut and dried with autoimmune diseases. It's as if the initiator disease says hey everybody come on board. I do admire your unyielding persistance and determination to find out what you have and hopefully when you return from your trip you will find a noninvasive treatment.

Your trip to California couldn't have come at a better time. I hope the warm sunshine :) and good companionship gives you a boost, mentally and physically!

warm hugs,
Razz
Live well, Laugh often, Love much

#5 Sweet

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Posted 07 February 2009 - 09:53 AM

Hey Mary,

Wow! I'm sorry that you now having something else going on, but really glad they caught it. The other thing, is this was a good lesson for me actually, so thank you. I need to see the doctor. I quit a long time ago trying to decide if any given symptom was from Lupus, Sclero, Sjogrens, Fibromyalgia etc. But I've been feeling pretty yucky for a couple of weeks and it's not passing....I should go in, so thanks for making me see that!!

Enjoy your mini vacation.
Warm and gentle hugs,

Pamela
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#6 MaryFanPhilly

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Posted 07 February 2009 - 10:56 AM

Thanks guys!! For all the support and the information too. That study on polyautoimmunity is very interesting Janey, and now that I'm 2 for 3 I will give my liver a good talking to. You are all so positive and such an inspiration.

It is a strange set of circumstances that lead us down the autoimmune path. Nobody in my family was ever diagnosed with one, and I never had any health problems til this. And mine was a very sudden onset unlike many people who have had symptoms for years without a proper diagnosis. Who knows why we get hit with the autoimmune stick. Perhaps one day the answer will come. I sure hope so.

This forum is great for exactly this purpose, sharing of information. Sweet, I sure hope it's just a little flare and nothing else, but do please get checked.

In the meantime I am gonna soak in some warmth in California... I am so lucky to have friends in warm places. Maybe one day I'll go and not come back! And if I do, each and every one of you are welcome to visit! Off I go to do some more packing. Woo hoo!

Love,

Mary

Jeannie: maybe your body is singing "I Love You Just The Way You Are!" tee hee.
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#7 debonair susie

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Posted 08 February 2009 - 12:39 PM

Well, Mary, Mary!

Thanks for getting us up to speed, here!

I am SO glad you are going to get away for a bit and enjoy some nice weather, along with good friends!
That sounds like the perfect prescription!

We'll be thinking aboutcha...Have some fun for us too, okay?!

Then when the effects of your trip wear off, get back with us and let us know how you are doing?
Special Hugs,

Susie Kraft
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#8 debonair susie

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Posted 08 February 2009 - 12:43 PM

Hey, Sweet,

It sounds to me like you might want to think about taking another vacation, Girlfriend!
It sounded like you had a bunch of fun and I'm positive the dr would order that right up for ya!

In the meantime, please get yourself to feeling better, okay? If it means going to the dr, then that just might be a good idea.

Keep us posted on how YOU are doing too, okay?
Special Hugs,

Susie Kraft
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