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Sjögren's Syndrome Message Board
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Old 11-21-2011, 06:01 PM   #1
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greeneyes3 HB User
Unhappy Sjogren's? What do you think?

I've been pretty sick for about a year and a half. I am 25 years old, 125 lbs & 5'4. I generally have a hard time maintaining my weight (hardcore strict diet & exercise to just maintain) but have been losing it without trying lately. I have a larger than normal thyroid and have multiple nodules on it, but none large enough to biopsy. Thyroid levels are normal. I have osteopenia (diagnosed at 19). I believe I have hormone issues, but am not certain yet. Okay.. onto the main stuff. I have several symptoms but the main ones are extreme, extreme fatigue, no energy, muscle pains (whole body), joint pains ( I feel like the tin man), shortness of breath (and I yawn over and over again to try to get a full breath), insomnia (sleep study= woke 122 times in 7 hours), very dry eyes (opthamologist says no tear production, I had plugs put in which helped a little), dry mouth, trouble swallowing (it feels like constant strept, like something stuck in my throat), electric "pulses" in my feet, feet are always cold (even when sweating), feet fall asleep all the time, chronic migraines (but those run in my family), and swollen ankles/feet, and they are red a lot, temperature sensitive (usually run very, very warm).

My opthamologist suspects sjogren's but the rheumo says fibromyalgia. My ESR (the one for inflammation) was "non-reactive." No ANA antibodies. I haven't been tested for specific sjogren's antibodies. What sounds familiar to you guys and what doesn't? Please respond, I am miserable and have little hope left at this point. I need answers.

Last edited by greeneyes3; 11-21-2011 at 06:47 PM. Reason: adding symptoms list

 
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Old 12-09-2011, 08:26 PM   #2
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giamarie12 HB User
Re: Sjogren's? What do you think?

Sounds very familiar. You are in the diagnosis Merry Go Round. The more doctors involved the absolute worse it gets. Too many ego's and opinions to deal with. This is a tricky disease like MS or Lupus. It took me decades of suffering. Probably not what you wanted to hear. Luckily you are young and believe me the medical profession has advanced in leaps and bounds since the 1980's when I first started having problems. Doctors pretty much have stopped screaming at their female patients and are a little more willing to listen to their patients. Speaking of patience that is unfortunately what you will need until you are lucky enough to find the best of the best physicians. Who do the bizarre tests and are not afraid to spend your insurance companies money. Ask for an Antiphospholipid Antibody. Factor 2 + 5. Just for your own knowledge to rule out these potential issues. I wish you luck getting them. Like I said. Doctors do not generally like to be told what to do so tread lightly. They seem to get upset because they spent all of their parents money getting their Doctorate. I was lucky enough to have the best rheumatologist but it took 3 years for tests to turn positive. As he said the disease evolves, I believe the lab who does the blood work evolves. I used a lab he suggested that I never used before always used one specific lab and always wondered if they were not just pushing through blood work. They were sued and lost due to a very severe case of not properly testing blood work. Scarey is nt it. But I do wonder. I wish you luck and a speedy, uncomplicated diagnosis. Take care. Try to be patient as these are better medical times to be diagnosed.

 
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Old 12-12-2011, 07:01 PM   #3
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sjogrens HB User
Re: Sjogren's? What do you think?

That sounds very much like Sjogren's. The pain and tingling you described sounds like peripheral neuropathy which is common with Sjogren's Syndrome, as is the extreme fatigue (it's my most debilitating symptom). Joint pain is also common, as is lung problems - in the past six months, my dry cough that I've had for years has turned into an asthma-like cough with wheezing and I now have a rescue inhaler.

Some people with Sjogren's are sero-negative, meaning their bloodwork will be normal but they can still have a very active disease process. Sjogren's can also be diagnosed via lip biopsy. It's unlikely a rheumatologist would suggest running blood tests for specific antibodies if your ANA continues to be negative, but s/he may recommend a lip biopsy based on your symptoms. Regardless, it sounds like you need to be receiving treatment for the pain, fatigue and dryness issues you are experiencing.

Best of luck.

 
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Old 12-20-2011, 02:49 AM   #4
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giamarie12 HB User
Re: Sjogren's? What do you think?

Me again, (Dolores). Have they done a C-Reactive Protein blood test. It won't tell you what disease process you have but it will tell that you have inflammation in your body. I had a high C-Reactive. They all basically did not know what from. Good Luck. You will get there. And yes, I had weight loss. I would wake up and it felt as though I lost weight when I arose from a nights sleep. Best Wishes for health and happiness.

 
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