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09/25/2009 07:02 PM

blood tests

janquito
janquito  
Posts: 1085
Senior Member

I have a question for you all. Since I've not been diagnosed with Sjogren's but have the symptoms (I do realize it could be something else that has the same/similar symptoms) and there is another thing I am questioning. Has anyone had their blood tests come back with normal levels? I had one very slightly elevated blood test but not enough to make my doc think it is an indication of anything. I am due to go see an ENT doc this week. Have terrible issue with choking; even on a sip of water! I never know when it is going to happen. It keeps getting worse. My mouth is still having the burning/tingling, spots, but the dryness has gotten a bit better because I am now on meds to help increase saliva. My eyes are still a bit dry...doc thinks I lack oils from top eye lid. I ordered sunglasses through the dry eyes website. With shipping it was only a bit over $8! Is much more in stores!

Ok, so, I'll await any responses. Thanks!

janquitoTongue

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09/26/2009 10:03 AM
rmm164
rmm164  
Posts: 2316
VIP Member

My blood levels were elevated and that's what my rheumy used to diagnose me. I just had more done for a different rheumy and we'll see what the levels are and what she says about them soon. I do know that different drs. can use different criteria to diagnose Sjogren's. So you might go to one with exactly the same tests results and symptomes and he'd say yes you have it and go to another and she say no. So, it's tricky to diagnose and there are actually a couple of different sets of criteria they use, it's not just a personal choice.

I'm glad the sunglasses didn't cost you an arm and a leg and that the moisture producing meds are helping. Good luck at the ENT. Keep us posted.


09/26/2009 07:35 PM
Sonni
Sonni  
Posts: 1960
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I'm an Advocate

I've had elevated blood levels too, that's how my rheumy was able to diagnose me. Since that time my blood seems to like a roller coaster ride, up and down and all around. Dr's are keeping a close eye on me trying to figure out what's going on. So far though, I'm in a healthy range...

I have a lot of choking problems too, my rheumy says its typical for Sjogrens because we don't make enough saliva to wet our food down. As far as choking on saliva, that happens a lot too. Make sure your body is hydrated and it should help. Its helped me. And then you get your 64 oz of recommended water a day.


10/03/2009 09:14 AM
janquito
janquito  
Posts: 1085
Senior Member

Thanks, Rhonda and Sonni. I went to the ENT, he says he thinks it is Sjogren's. He ordered a biopsy of my lip to see what it says. He says he thinks the choking is from acid reflux/(I cannot think of the other thing that goes along with that-grrr!) so he prescribed stronger meds for that. I had been on Renetidine but he said sometimes that is not strong enough for people. I just do not really like being on acid reducers especially now that I read how people who take them tend to get pneumonia easier. I get so sick of taking the pills. I was down to three in the morning (plus others throughout the day) but am back up- taking 10 in the morning and others throughout the day. Makes me so sick of water. I love water but by the time I get the pills down I just can't stand anymore. I do drink water a lot. The pills just seem to sit there for a long time.

The eye I'd had the ulcer on still feels weird. Sometimes I feel the same feeling that came with the ulcer but then other times it just seems 'not right'.

Oh, I know what I wanted to ask. Has anyone found a good lip moisturizer? Seems whatever I've tried does not help and some makes the dryness worse.

Janquito


10/03/2009 09:48 AM
rmm164
rmm164  
Posts: 2316
VIP Member

I'm glad you're getting some answers and getting more of the right tests done. It's always a relief to find a dr. that will do the right tests. I've got acid reflux too, probably from taking so many anti-inflamitories in my life. So, now I have to take a pill to take care of the damage I've done from taking so many pills. Arrgh!! There's no end to the number of pills we have to take is there?

I don't have a lot of trouble with dry lips but my daughter does every winter and I buy her either the Bee Balm or the Vaseline stuff. I guess actually what I should say is that my lips are always dry and I just leave them that way, I don't like stuff on them. But those 2 brands usually work for my daughter. She doesn't have Sjogren's, she just won't stop licking her lips in the cold winter wind. Silly little girl...

I hope you get all the answers you need and that you start getting the treatment you need, too.


10/04/2009 07:06 PM
GrandmaR

I have had real good luck with BURT'S BEES Medicated Lip Balm with Clove Oil.

10/05/2009 06:22 AM
carmdi04
carmdi04Posts: 58
Member

Thanks GrandmaR. I will try it. Your friend, Diane

10/23/2009 11:14 AM
janquito
janquito  
Posts: 1085
Senior Member

Ok, so I went to the doc for the results of my biopsy. He said it was neg so he has doubts that I have Sjogrens. I asked what I'm to do now since all the symptoms point to having Sjogren's. He said I'll just be treated as though I have it. How silly. I am going to make a follow up with my rhuematologist to see what he thinks. If it isn't Sjorgren's, I sure would like to know what it is! I know there is burning mouth syndrome but I doubt very much that it has the same symptoms as Sjogren's.

Any thoughts from you all would be appreciated.

Thanks,

Janet


10/23/2009 11:44 AM
rmm164
rmm164  
Posts: 2316
VIP Member

What does he mean they'll treat you as though you have Sjogren's even though the tests show you don't have it? Did he explain what he meant by that? Some of the treatments for Sjogren's are pretty hardcore side effects wise and I sure wouldn't want to take them if I didn't have to. But if he just means they'll treat the dry mouth and dry eyes then that would probably be ok with me. Did that make any sense or was I just rambling in my questions? I'd just hate to see you taking meds you don't have to take.

Have you read the symptoms of Burning Mouth Syndrome? I just read about it on WebMD, it does sound a lot like the Sjogren's dry mouth. I just would check it all out carefully before you take any of the Sjogren's meds if I were you.

Good Luck. I hope you keep us posted one way or another. Even if it does turn out for sure you don't have Sjogren's, you can still come and talk to us, we won't kick you out.


10/23/2009 12:19 PM
janquito
janquito  
Posts: 1085
Senior Member

Thanks, Rhonda, I love the fact that I won't be kicked out. lol

Yes, I have read the burning mouth stuff and yes, I agree there are similarities. I just have a problem with all of my symptoms. The dry eyes gets so bad at times that I am putting drops in them everytime I turn around. I had the cornea ulcer and had an appt today with the eye doc but he is sick so reschedule is next week. I'm pretty sure the ENT was mainly talking that the treatments will be for the dry eyes, mouth and that sort of thing. I've had throat problems and a dry cough, feeling like I have heart issues/hard time breathing. The latest episode was just a few nights ago. I normally have low blood pressure (low 100's down into the 90's). Well, I all of a sudden felt my heart was racing, took by blood pressure; it was in the 135 range. I continued taking it off and on that night/morning. It got up to 147 so I called the mayo clinic ask the nurse hotline. The guy said after awhile that he thought it might just be anxiety or panic. I wasn't feeling panickey or anything. I ended up having to take my blood pressure off and on the following day as I got the racing heart feeling again. Not had it since. I'm on a medication for tremors and have not had any skipping or racing of my heart since so it was a surprise to me when it started doing this.

Right now the ENT is having me take steroids; two tabs each morning for 7 days, one each morning for two days then off. He said it should help my arthritis too. I'll just have to go to the rhuemie and see what he thinks.

I appreciate your feedback.

Janet

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