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Old 07-27-2008, 08:38 AM #21
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Glad you got answers...

AMN...I didn't teach her the handshake but I can show her the happy dance...lol

The one I used to do at work...
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Dejibo (07-27-2008)
Old 07-27-2008, 10:14 AM #22
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Well I WAS confused as I have been following your story on Sjogren's having gone through it myself. But I had dry MOUTH very badly too.

Ok, you already WERE DX with MS then this rhuemy came along, for the dry eyes etc and on and on.

BUT I am glad your MS docs are so certain, mine were not. I HAD an MS DX then not, then maybe, then not. So when I saw my Rheumy she told me I had way too many symptoms to not have some DX.

The next Rheumy said no, without the labs to substantiate a DX of Sjogren's he took that DX away. BUT he contributed to another DX that I have been fighting with the MS docs, Autonomic dysfunction that is another story...

It gets so dang confusing. Told you that Methotrexate had side effects but DID get rid of my spasticity entirely !!! NO one told me that.

Good luck Girl!! Keep us posted. How are your eyes now??

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Old 07-27-2008, 10:23 AM #23
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My poor old eyes!

I had the punctal plugs put in the bottom. they did help some, but not enough. I am gonna go have the upper plugs done.

yes! I was very confused. I had a firm Dx of MS, then this RA sez, nope, its SJS! I was concerned, confused, and more than a bit nervous. I am Negative for blood work for it, and lupus, and I am negative for lots of other things that SJS has. I drool at night (dont tell anyone) so I must have moisture in my mouth...yes? I have very dry skin, and other dry things, but in the face of all of those negative things, there is no need to pull me off a path with firm diagnostic critera being met through MRI, blood work, and so on to put me on a path with lots of non markers.

so, my eyes are VERY dry, and I hope the quad plugs will do the trick.
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Old 07-27-2008, 11:01 AM #24
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Oh my dear your poor eyes!! Have you asked or tried Restasis?? It CREATES tears eventually.

Now I hardly put eye drops in, or maybe only at night where gravity works against tears. All i know is that I Have improved my poor eyes and mouth that I do not take the pill for saliva anymore either. Maybe its the good nutrition program I am on... who knows?

Sjogren's still COULD be a secondary DX...what do you think? What else causes eyes to dry out as much as yours?? So you will see this Rheumy again? I mean some have many MS symptoms yet have no lesions yet... ya never know...

Let me know k?

Best to you..

Jan
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Old 07-27-2008, 11:34 AM #25
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I won't tell about your drooling if you don't tell about my drooling Dej!
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Old 07-27-2008, 12:07 PM #26
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Quote:
Originally Posted by Dejibo View Post
....If any of you were following my story, I have been dx with MS since 06. I went to an MS center, and found amazing MDs. for the last few months my eyes have become EXTREMELY dry! and an eye surgeon who gave me eye plugs suggested sjogrens. Did the blood work, and it was negative. Saw a rheumy MD and she was dancing in the streets claiming that I had been mis diagnosed and MS was not what was wrong with me, and that I have been shooting all these drugs for years and its not gonna work, or help me, and my MS center should have never dx with me MS, and she wanted to put me immediatly IN the hospital for 5 days of methotrexate and IVSM and then put me on oral methotrexate and it was a whirlwind of confusion and frustration. I was ANGRY to thinK I was mis diagnosed by a major medical center, and had been mislead! ...
Dejibo, I have been following your story closely but I can't recall, did you ever have the lip biopsy so that this can be laid to rest? Like you said your MS Sx came long before any Sjogerns, but clinical biopsy proof should certainly put an end to any medical ego tug-of-war. Again, glad to hear that you haven't been poking with C for 2 years for nothing.
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Old 07-27-2008, 03:44 PM #27
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I have NOT had the lip biopsy done, and have chosen to forego it. since it wont matter in my Dx one way or the other, why put myself through all that?

I guess I am considered secondary SJS, so my poor dry eyes!

Almost every drop I have tried has made my eyes puffy and swollen and STILL DRY. so, we are trying to avoid any drops right now, and let them heal a bit.

I did have the MS stuff loooong before any dry eyes.

I will stay in the MS camp and be thankful that its not something worse. trust me, there are worse things.
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Old 07-27-2008, 05:12 PM #28
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i'm sorry to hear of all your travails but glad that your dx has firmed up and you know where you stand.

i'll say a prayer that your eyes improve. that is very painful to have such dry eyes and can lead to a corneal abrasion, also painful. i speak from experience. so hope your tx helps.

glad to see your update. please take care.
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Old 07-28-2008, 09:45 AM #29
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Sorry that you have MS, but at least you got some clarity...
Now if only your could get something that would help your eyes.

Maybe watch Titanic for a day? I cry every time I hear that awful dialog...
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