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Old 11-07-2013, 07:32 PM #1
daisy.girl daisy.girl is offline
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Default MS and Sjogrens?

I know it has been a while since I have been here. It has been a tough year for me. Three surgeries and my mom passed away.

Now, they think I may have Sjogrens too! I have fought with severe dry burning mouth for a long time, and lately my eyes are so dry and blurry!
My right lower lung is collapsed and I just feel like crap!

Anyhow, my question is....anyone here with both? Do you have to see a rheumatologist and your neurologist?

I said no more right now, so I haven't been to the rheumatologist yet....and I don't want to go.

Thanks everyone,
Daisy
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Old 11-07-2013, 09:21 PM #2
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((((((DAISY))))))

So sorry honey. That really sucks canal water!!
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Old 11-08-2013, 07:13 PM #3
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So sorry for all of the challenges you've been dealing with..and now another autoimmune disorder? Sheesh, dear...hope you get treatment and symptom relief soon
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Old 11-09-2013, 12:06 AM #4
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*tkrik cautiously raising her hand* ME!

I was just dx this summer with Sjogrens and Lupus. I wasn't 100% on board with the rheumatologist and will be getting a second opinion. However, I was in the ER this past weekend and in addition to digestive symptoms, which is why I was there, I had swollen (and I mean swollen) fingers with a red/purple swollen joint area on one of them and my left eye was so dry it felt like it was burning, not gritty but burning. The nurse said it was Lupus or Sjogrens acting up. So, I am now pretty convinced that I do in fact have them. My current rheumatologist never gave me the results of my tests, which I didn't like at all, and diagnosed me without seeing the test results, just based it on my symptoms, pictures I had of my swollen tendons and joints, and her feeling them as some were swollen at the time of my initial visit.

I will be starting Plaquenil after I finish up the antibiotics for the diverticulitis to see if that helps with both of them.

I do see both a neurologist and a rheumatologist, each for the respective illnesses. My neuro asked that the rheumy send him all reports and tests from my visits. It is not very common that someone with MS gets grouped, if you will, with these autoimmune diseases. There are common groupings but MS is not part of those groupings. So, Daisy Girl, we are the lucky ones, huh?

Hang in there!
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Old 11-11-2013, 07:55 PM #5
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sorry to hear that daisy, i will have to look up srojens...

i lot my fathor in june too, i know it sucks
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Old 11-11-2013, 08:32 PM #6
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So sorry for your loss Daisy..

So sorry for your loss Clarkster.

We are never ready to lose a Parent..
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Old 11-12-2013, 12:46 PM #7
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Quote:
Originally Posted by tkrik View Post
*tkrik cautiously raising her hand* ME!

I was just dx this summer with Sjogrens and Lupus. I wasn't 100% on board with the rheumatologist and will be getting a second opinion. However, I was in the ER this past weekend and in addition to digestive symptoms, which is why I was there, I had swollen (and I mean swollen) fingers with a red/purple swollen joint area on one of them and my left eye was so dry it felt like it was burning, not gritty but burning. The nurse said it was Lupus or Sjogrens acting up. So, I am now pretty convinced that I do in fact have them. My current rheumatologist never gave me the results of my tests, which I didn't like at all, and diagnosed me without seeing the test results, just based it on my symptoms, pictures I had of my swollen tendons and joints, and her feeling them as some were swollen at the time of my initial visit.

I will be starting Plaquenil after I finish up the antibiotics for the diverticulitis to see if that helps with both of them.

I do see both a neurologist and a rheumatologist, each for the respective illnesses. My neuro asked that the rheumy send him all reports and tests from my visits. It is not very common that someone with MS gets grouped, if you will, with these autoimmune diseases. There are common groupings but MS is not part of those groupings. So, Daisy Girl, we are the lucky ones, huh?

Hang in there!
Tkrik,
That's what I keep reading, that sjorgrens goes with lupus and other auto immune diseases, but MS is not listed.
It is pretty scary when your vision is so involved!
Thanks for the info, and I hope you find a rheumy you like. I live in a small town, so to find a decent one, I am going to have to drive.....and well, I am just over being sick and basically over everything!!
Daisy
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Old 11-13-2013, 07:48 AM #8
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It could be Sjorgrens, but it also might not be.

I was tested (through a biopsy of the inside of the lip), for it last year because I too developed dry eye syndrome and have a lack of saliva, so have a dry mouth too.
The test came back negative.

My doc said that dry eye and dry mouth syndromes often occur in auto-immune disorders, but are not necessarily due to Sjogrens.

Artificial tear drops during the day & using the gel at night help to keep the eyes lubricated...don't use visine type stuff because it can cause more dryness if used too much.
Sipping water with a bit of cranberry or lemon juice mixed in it helps with the mouth/throat dryness. There are mouthwashes for dry mouth that work as well.

With love, Erika
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Old 11-13-2013, 11:36 AM #9
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And my neuro pointed out to me the other day that some of my meds can cause severe dry eyes/mouth. He made sure to especially point out that dry mouth can cause dental problems.
So I hope you can figure out what is going on and get some treatment/relief...let us know, okay?
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