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Sjögren's Syndrome Message Board
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Old 05-17-2013, 01:19 PM   #1
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Question Just not sure, but could it be?

Hi everyone,

For the past 6 years I've dealt with many strange symptoms all chalked up by various doctors to be stress related. But as I get older (now 44) they are getting worse. Below are symptoms:

Hair loss over entire head along with a burning nerve pain on scalp
Extreme fatigue
Joint pain
Tendonitis in the wrist so bad can't use hand much
Terribly dry eyes expecially in the evening and at sleep. Lids stick to eyeball.
Dry mouth
Some heart issues, bundle branch block and mitral prolapse
multiple kidney stones
Raynauds but was told it was just poor circulation
blurry vision although vision is worsening with age


The fatigue is just terrible along with insomnia. I also get terrible pallipitations and other things. My ANA and autoimmune thus far has been normal. But one of the c3 components was elevated. I don't know what to do as the doctors just either do not believe me or care to hear me complain so I have stopped. Does this sound like what you all are experiencing? I had a recent major stressor that really kick started more of my symptoms. Thank you for listening.

 
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Old 05-17-2013, 03:17 PM   #2
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Re: Just not sure, but could it be?

The fatigue is not only insomina. And you are probably getting osteoarthritis. If I could bet, no, I KNOW you got Sjogren's. I have too many of the same symptoms. Try a Rhumotologist (spelled wrong) and ask the girl before you make a apointment if they know about Sjogren's Syndrome. I went to one who told e it was the meds I was taking. And get the Sjogren's Book on Amazon. It's worth the money. Doctors don't know a lot because Sjogren's is rare. If you need tips, well, I'll try to watch the board. I feel sorry for you. I got lucky. I found out about mine through a wonderful woman patholigst in our Dental School here. But I found out a lot on my own, too. Take care. Love, Owl

 
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Old 05-17-2013, 05:56 PM   #3
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Re: Just not sure, but could it be?

Hi Sims no I don't think I've taken any antibiotics in some time that I recall.

Owl thank you. I will try and contact one. I did see one of these specialists about 5 years ago and they did listen but ran all the tests that appeared normal. There was that one c reactive c3 ratio test that came back high. And in the notes on the lab it stated can be due to autoimmune, infection or multiple sclerosis. He did not really address that test but all others were in range. I've since had an ANA and some rheumatoid factor that was always in range normal. So either I have a strange system not showing anything or I don't have it at all? Ughhh frustrating. I think out of all of this the worst thing is these dry eyeballs. And it's not just the standard oh my eyes feel dry but where the lid actually is stuck to the eyeball in the middle of the night. Thank you for letting me vent. I appreciate your listening and offering your advice to me.

 
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Old 05-17-2013, 07:14 PM   #4
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Re: Just not sure, but could it be?

What you need is a lip biopsy. They took mine in the front of the mouth. Takes about a week to get results.Gotta go to a oral surgeon for one. My blood came back negative. But the biopsy is the "gold standard" as my favorite doc said. It's 100% sure. Good Luck! Love, Owl.

 
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Old 05-18-2013, 10:25 PM   #5
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Re: Just not sure, but could it be?

ok. I had sleep problems with my bipolar, but it got worse when I got Sjogren's. 2 or 4 hours a night. I finally found herbs that helped, and now the arthritis I have is so bad I'm back to 2 or 3.
My joints where I have osteo crack accasionally.
I've always had a lot of floaters. I wore glasses until lately I had cataract surgery (I am young for that, I was 58). I have more trouble with my mouth than eyes. The drops that I do use is Refresh Celleuvic (spelled wrong).They are the best I think.
I have chest pains occasionally, but noone seems to care. I was lucky enough fo find another SS person & she has them, too. Nothing is done about hers, either.
I have to take 50 mg. Ritalin a day so I can get out of bed. I haven't flipped a coin yet to find out what is worse - the osteo (back, hip & both knees - I go for knee replacement 6/3) or the fatigue.
I am hypothypoic I mean my thyrois doesn't work right and I have to take hormone for it. I don't get blue or nothing/ Now Raynauds is kinda cmmon for Sjogren's, I found out in my research. I'm glad I don't have it.

The only antibiotics I've ever been given is types of penicillin. I'm bipolar and they don't want to take a chance of drug interaction. But if I start to get sick, I spray a few sprays of collidal silver in my mouth. I don't use a lot of it. But it really helps the best.
If you got any more questions, please let me know. But if I were you, I'd go get that lip biospy. Now I've had drugs do bad things to me (my bipolar drugs) but what you wrote sounds like they are trying to pull the wool over your eves, because they don't know about it. I don't think it cost very much (I had insur.) it took 15 min. and didn't hurt much. Good luck.Love, Owl

 
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Old 05-19-2013, 01:50 PM   #6
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Re: Just not sure, but could it be?

Sims,

I am sure over the past 6 years I have had some antibiotic therapy. But not for a year or two perhaps.

To answer a few questions I do have tons of floaters. I had an episode where a floater made it to central vision and I thought maybe it was a macular hole or something. I did go in to find I had a vitreous detatchement and apparently that is a huge floater. There is nothing that can be done. I have about 40 small floaters in each eye with the one big one in the left.

I get about 3 hours sleep per night and it has been that way for maybe 2-3 years. The only way I can get more is if I take something to knock me out.

The tendonitis in the wrist began about 2-3 months ago and is severe. It's mostly the thumb tendon and worse at night. I do have random joint pain all over that seems to come and go over the past several years. My knee's do crack.

My skipped heartbeats do shake my body and there are moments where the heart feels at though it's stopped then started again. I do have bradyacardia and a right bundle branch block with mitral valve prolapse.

I have what appears is scalp nerve problems and I also get a strange sensation on my face of sunburn from time to time. My legs and calfs do twitch often. In the mornings my legs feel so heavy at times it is hard to walk but it seems to fade after a few hours. It's like my legs are heavy weights.

I will have to investigate this antibiotic toxicity you mention. This is quite interesting. Thanks again for taking the time to write back to me.

 
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Old 06-12-2013, 05:39 PM   #7
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Re: Just not sure, but could it be?

Hi,
I almost feel sheepish responding since my dry eyes are nothing in comparison to yours. At first I tried the ointment and drops. Bothersome and annoying. The ointment blurred my vision, so only used it at night before going to bed; eye drops only helped for a brief period of time. Then I read about fish oil capsules for dry eyes and decided to try it. It has completely taken care of the problem for me. Twice I quit taking them, thinking maybe it was "cured". Both times the dry eyes returned after a couple of weeks or so.

You seem to have a far more severe case than I do, but perhaps the fish oil could help make it less severe, even if it doesn't clear it up completely for you. It's been about 5 years since I started the fish oil. As I recall, it took about a month before it had it's full effect. There are several brands around and I don't know if some are better than others. I just get the Nature Made brand

Last edited by Administrator; 11-10-2013 at 08:19 PM.

 
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Old 06-29-2013, 04:51 PM   #8
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Re: Just not sure, but could it be?

jessigrl

Sounds like you do have Sjogren's and maybe some overlap with something else. Another test you could have done is the ANA Ro and La. If you have both antibodies, it means you have Sjogren's. Having just one could mean you have some other AI disease.

I wanted to tell you too that I have carpal tunnel in both wrists. When I had the test done, the doctor gave me two wrist supports and said wear them every night to bed. I did, and now my wrists are fine. I have even left off using my left wrist support, but I always wear my right. I guess I tend to sleep with my wrist bent. You don't have to pay for expensive tests--you can get them at a medical supply store. This worked for my mom too.

All the best to you.

Last edited by Administrator; 12-28-2013 at 12:17 PM.

 
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Old 07-02-2013, 12:58 PM   #9
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Re: Just not sure, but could it be?

The average time to diagnose Sjogren's is six to seven years. you can have it before your tests show it.

 
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