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Sjogren's Syndrome
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Posted 6/9/2015 6:41 PM (GMT 0)
I have a multitude of symptoms and I don't know what they point to. Six months ago my tongue started to burn. It is very dry. I have had it everyday since. I have had a ton of different tests done. I have no more vitamin or mineral deficiencies. I have been treated for thrush, to no avail. I have tried going off of different medications that could be causing this. Nothing is helping. I have some other odd symptoms. I have GERD, very dry eyes that I have tried getting my tear ducts plugged. I also have what my doctor tells me is a recurrent blocked salivary gland. I have bouts of dizziness, which I have been told could be vertigo due to an imbalance of fluid in my ear. Then, I also was tested almost a year ago to see if I could donate a kidney to a young man in my area that needed it. My kidneys are fairly healthy but not healthy enough for me to only have one. I am only 37.
I am at the point where no one is listening to me anymore. My dr. won't give me a referral to go see a rheumatologist because my Sjogrens testing came back negative.
But I have read that it can come back negative even if you are actually suffering from it. I don't know what to do... I am so frustrated. No one I speak to seems to be concerned at all about what I am going through.
Does anyone have any ideas for me? Please?
Thank you in advance
Posted 6/10/2015 7:29 AM (GMT 0)
Hi AD,
I know how you feel like ,I can fairly relate to you .Change your family doc or if insurance allows just find A rheumatologist and go for testing again in 3 months .
This time have a journal of symptoms written down with dates so you seem sure for docs to see,have a spreadsheet if you know how to do it.

Once test is back or let's say it's again negative ,ask questions and start from there.
I never knew it can be caused by certain medications .
Keep posting,Good luck!
Posted 6/10/2015 6:55 PM (GMT 0)
Thank you so much Cilly!
Sometimes I wonder if these boards are fake because no one ever responds. Thank you!
Posted 6/10/2015 9:58 PM (GMT 0)
Lol. Healing Well is not fake, I assure you!

I hope you can figure out how to get a rheumatology consultation, because I suspect something auto-immune is going on. Sjogren's, like many other auto-immune diseases, is not necessarily diagnosed buy blood work alone, and your PC is doing you a disservice by assuming it is.

The fact that your mouth, eyes, and ears are involved does point to Sjogren's...

Best wishes,
Posted 6/11/2015 4:55 AM (GMT 0)
Thank you so much for the support. I have an appointment on Monday with an ENT. My PCP won't refer me to a Rheumatoid specialist until I have seen an ENT.
It is very comforting to have people out there that don't just act like I am making this up.
Thank you so much.
Posted 6/23/2015 1:09 AM (GMT 0)
So very sorry to hear that your pcp is not taking your symptoms seriously. You need to find a different dr or simply demand a referral to a rheumatologist. Although I am "lucky" to have positive bloodwork, I have read many individuals on another forum I belong to who are "seronegative" for sjogrens but are treated based on symptoms.

Please keep us posted. Hoping you can find someone who can diagnose you and treat you.

Sending positive thoughts your way.
Posted 6/23/2015 3:57 AM (GMT 0)
Thank you so much finallyadiagnosis. I really appreciate the support. I went to the ENT. He said there was nothing he could do and I had to just let it run its course. So, I went and saw another dr at my PCPs office. She is going to consult with my PCP. She said she had a couple of theories but didn't want to share them with me until they had had a chance to share notes. She doesn't want me researching it I my own. I am still very frustrated. I'm have asked multiple times now to have a referral for a rheumatologist. My PCP absolutely will not do it. I just don't understand. It isn't going to be any "skin off her back" to just do it. I just feel so frustrated and confused. I feel like everyone thinks I am making this up.... I would not wish these symptoms on anyone, but I am glad that this forum is here. Thank you
Posted 7/28/2015 9:10 PM (GMT 0)
Sorry to hear you are being refused a chance to see a rheumatologist. Could be due to the fact that they are so busy and overbooked or it could be that your insurance won't allow a referral to a rheumatologist without certain criteria being met.

I was told I suffered from anxiety and was depressed because I had recently lost my mom - yes I was depressed and feeling anxious over the loss, but I knew my body and I knew that something medically was wrong. I had to fire two PCPs before I got the PCP I have now that told me he would not give up on me until he had answers. Sometimes you have to kiss a frog or two before you get a prince. Don't be afraid to advocate for yourself.
Posted 11/19/2015 7:24 AM (GMT 0)
I get so upset hearing that people are treated like this, when they are suffering so much.

I had no problem getting referrals to a Rheumatologist, but I saw 9 of them before I finally found one that acted like he cared and would try to help me.

I think one problem is that a lot of Primary Care doctors don't always realize the extent of problems with Sjogren's. Even one of my doctors said it was only dry mouth and dry eyes. NOT!!!

Keep on looking for your prince.

Yorkiemthr
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