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Old 10-14-2011, 08:48 AM   #1
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Does this sound like autoimmune disorder?

I recently turned 40 and desperately want to feel healthy. I have a habit of lying to others (and myself) about how bad I feel because I don't want them to worry and hate to think of myself as "fragile," but have been feeling much worse lately and think there really might be something wrong.

I wrote down my symptoms and am discouraged by the list. Most of them are long-term issues (20+ yrs) except the rash and joint pain. I've always thought of them as distinct issues, but when looked at all together have me worried.

I've researched some autoimmune disorders and while there are some similarities, none of my problems seem bad enough to count. I have had a couple autoimmune things previouly diagnosed (MEWDS in one eye 12 yrs ago--affects the retina) and multiple food intolerances, possibly celiac.

Could someone give me some guidence.

Abnormal fatigue
Low energy all day—worse in morning and late afternoon
Difficulty waking up and extremely foggy in mornings
Wake up exhausted, even after plenty sleep
Difficulty concentrating, focusing, and remembering things
Agitation/Anxiety
Diagnosed with major depression
Headaches, mostly in back of head (one recently with light and noise sensitivity—mild migrane?)
Scalp often feels tingly/itchy/*****ly, (difficult to explain)
Stiff/Painful/Sometimes swollen joints (mostly hands and wrists, sometimes ankles, knees, neck. Varies in intensity)
Back and neck pain
Tingling in hands, feet, scalp
Abnormally cold hands and feet
Itchy rash on chest (comes and goes, worse with sun exposure)
Frequent nausea, bloating (numerous food intolerances diagnosed 1.5 yrs ago)
PMS--getting worse

All are long-term problems, except joint issues (casually diagnosed as arthritis because tests for autoimmune disorder came back negative), and rash on chest.

Thank you!
Heather

 
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Old 10-14-2011, 10:27 AM   #2
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Re: Does this sound like autoimmune disorder?

All are long-term problems, except joint issues (casually diagnosed as arthritis because tests for autoimmune disorder came back negative), and rash on chest.

Thank you!
Heather[/QUOTE]

Dear Heather,
If you are celiac, you can be screened pretty definitively for it by a simple blood test, although the gold standard is by biopsy. What sort of autoimmune test were run? Also, did your blood tests include SED rate and/or CRP level? In most autoimmune problems, those last 2 are usually raised above normal. An ANA test alone will not rule in or out autoimmune disease if there are clinical signs. I know that there are several Autoimmune diseases that are ANA test negative but positive other antibodies. Rashes can also be specific for certain Autoimmune diseases. A dermatologist might be able to help you there, or even your GP, if they get to see the rash as it is happening. On the other hand, anxiety can cause many of your symptoms as well as thyroid problems and a variety of nonautoimmune related things. The lupus board has some stickies posted that are a great resource for info. I know from personal experience that getting treated for an autoimmune disease can be a long journey, should you have one. Hope this helps and hope you have a great weekend!

 
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Old 11-28-2011, 10:41 AM   #3
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Re: Does this sound like autoimmune disorder?

Quote:
Originally Posted by gdiluca View Post
All are long-term problems, except joint issues (casually diagnosed as arthritis because tests for autoimmune disorder came back negative), and rash on chest.

Thank you!
Heather
Dear Heather,
If you are celiac, you can be screened pretty definitively for it by a simple blood test, although the gold standard is by biopsy. What sort of autoimmune test were run? Also, did your blood tests include SED rate and/or CRP level? In most autoimmune problems, those last 2 are usually raised above normal. An ANA test alone will not rule in or out autoimmune disease if there are clinical signs. I know that there are several Autoimmune diseases that are ANA test negative but positive other antibodies. Rashes can also be specific for certain Autoimmune diseases. A dermatologist might be able to help you there, or even your GP, if they get to see the rash as it is happening. On the other hand, anxiety can cause many of your symptoms as well as thyroid problems and a variety of nonautoimmune related things. The lupus board has some stickies posted that are a great resource for info. I know from personal experience that getting treated for an autoimmune disease can be a long journey, should you have one. Hope this helps and hope you have a great weekend![/QUOTE]

yes it does sound like a autoimmune disease to me. I personally have lupus/fibromyalagia/Restless Leg/body Syndrome and i hate to tell you but seems you already know, the list just grows of symptoms...you ana and sed rate are important in diagnosis of your disease. But it sounds alot like Lupus to me. I'm no dr. so don't quote me on that. I just want to give you many hugs and prayers because I know how down you can get from things like this. your friend, junebugzz

 
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Old 11-29-2011, 05:33 PM   #4
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Re: Does this sound like autoimmune disorder?

Thanks for your replies! I had an appt with a rhuemy and got a good feeling about him. He did the blood test for celiac and it was negative, which makes me very happy! I must just be intolerent. From his comments and a quick pressure point exam, I think I'm headed down the fibro path. He didn't say yet, but I have a follow up next monday. I'll definitely be back on the boards if it is!

 
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Old 12-06-2011, 09:33 AM   #5
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Re: Does this sound like autoimmune disorder?

I had another appt and the blood work was negative (I'm not celiac, just gluten-intolerant--Yay!)

So the rheumatologist said with complete certainty that I am suffering from fibromyalgia. It's a bummer but also a relief to have everything defined.

Now to the fibro boards to start dealing with this...

Thanks again!

 
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Old 12-06-2011, 09:59 AM   #6
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Re: Does this sound like autoimmune disorder?

I am glad that you have a diagnosis, sort of. I don't wish anyone to be sick - but at least now you can have a plan of treatment and that so makes a difference! Good luck! and Happy Holidays!

 
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Old 08-17-2012, 08:15 PM   #7
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Re: Does this sound like autoimmune disorder?

Heather - have you tried to go off of gluten, no wheat, no rye, no barley and sometimes no oats and maybe even eliminate dairy, but try no gluten or no dairy, one at a time to see which one maybe could be the problem. Maybe it is an allergy to a food - or something you are using in your home, a soap, hair dye, a cleaning product. Maybe have an allergy test done a blood allergy test is available too not just the ***** on your back kind. I am not a doctor but know an allergy to food or a product can compromise your health.

 
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