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Auto Immune - Can't get a diagnosis!!

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Old 05-07-2008, 08:53 AM   #1
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Join Date: Apr 2005
Posts: 103
nannie8 HB User
Auto Immune - Can't get a diagnosis!!

Posted yesterday on the lung disorder board; I think it belongs here instead.

Hi. I'm a 42 year old woman in pretty good health, relatively speaking. I recently moved to Colorado from Baltimore (about 2 years ago). Anyway, to make a long story short, I have a weird health history. At age 15 I had a pericardial effusion, followed by a pleural effusion, high fevers, and a very hyperactive thyroid. I was hospitalized twice for lengthy periods of time and was sick for almost two years. I had a lot of inflammation and had to be on prednisone, aspirin, inderol (for rapid heartbeat from the thyroid), and PTU for the thyroid. I also had radioactive iodine treatment for my thyroid. They never figured out the cause; I remember hearing "auto immune" alot, but it was never resolved. They said they wrote my case up in medical journals; I was a mystery. I was tested for lupus, RA, everything under the sun; had biopsies of most of my major organs and a bone marrow test. I never knew the cause. Then from the age of 18 until last year, my thyroid function tests were normal. Over the years I did have chest/lung issues...doctors scratched their heads and said "costochondritis? pleurisy?," etc. Never a real diagnosis, but all in all, I was generally healthy. I had several echocardiagrams and heard various results from them: "You have mitral valve prolapse, you don't have mitral valve prolapse, you have leaky valves, you have a leaky aorta, your EKG shows valve problems, nothing to worry about, something to worry about," etc. Never a real answer. Then about a year ago my thyroid went hypo. Then I had a CT scan that showed damage/scar tissue in my lungs and two pulmonary function tests that showed "bad" exchange of CO2 and O2. I also showed lowered O2 in a sleeping test at night. My last EKG showed faulty valves and hazy lung functions in an xray. About 10 days ago I started having severe chest pain, costochondritis like in comes and goes and hurts like's debilitating. Severe pain. I've been taking 800 mg Motrin and the doc gave me a scrip for Indocin, but I don't like the way that makes me feel. It hurts so bad it feels like an effusion again. It's in my shoulders, rib cage, collar bone and even around to the back of my rib cage. It hurts with exertion. The only thing that seems to temporarily relieve it is a moist heating pad. I'm still waiting for blood work results from my doc, but I don't expect any miracles...I've been waiting 27 years for a diagnosis. I'm worried about the heart valve thing. I also have what feels like a sore lump in my right chest area, close to the shoulder. I smoke and plan to quit. I did not smoke all those years in the past when I had all those problems, so I know it's not the cause, but I know I have to quit because it isn't going to make matters any better. I'm active, bike ride, hike, etc., but can't do much of anything lately because I'm in so much pain. Any thoughts or advice? I would really appreciate it; I'm getting desperate and I'm afraid I'm going to die before they figure out what's wrong with me.

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Old 05-12-2008, 02:51 PM   #2
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Join Date: Apr 2007
Location: Pewaukee, WI USA
Posts: 38
Bamboo HB User
Re: Auto Immune - Can't get a diagnosis!!

Nannie8, I'm so sorry you're suffering so. You don't say what the specialties of the doctors are or what treatments have been tried. I'd be interested to know that. From your description, they seem only to be dealing with your symptoms, notably, pain. We also don't know what medical resources are in your area, which would be helpful to know.

I have been "diagnosed" with non-specific auto-immune disorder. I'm absolutely certain that my symptoms began in early adulthood and continued into my 50s before someone got it right: it started with arthritis and progressed to gastro-intestinal problems (IBS), asthma, fibromyalgia and multiple miscarriages due to kaolin clotting factor.

Then I developed pericarditis with effusion in early '07. They built up from early January until I had crushing pains in my chest by the end of February. Finally, I had pains behind my shoulder blades: that caused my doctor to send me for a chest CT, which revealed the pericarditis and the effusion. I was also very anemic. My doctor finally sent me to a rheumatologist. He trained with the best people in the country and is very highly regarded. He told me I have some of the criteria for a Lupus diagnosis, but I don't really have lupus. He's been having me try various medications and are still working on balancing immune system suppression with my body's desire to fire up its immune system.

I'm telling you all this in the hopes that some clue will emerge that will give you some guidance. I went through only a short time of uncertainty and pain; you're having to deal with a LOT more. I hope we can put our heads together and give you some ideas.


Old 06-04-2008, 04:50 AM   #3
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Join Date: Jun 2007
Location: central, PA, USA
Posts: 12
pepperderr HB User
Re: Auto Immune - Can't get a diagnosis!!

do you know if they tested you for anti-phospolipid antibody syndrome? It is a lot like lupus but it can cause blood clots too. It is an auto immune disease. Some people can also have it and be sero negative which means the blood test never show you have it even though you have all the symptoms. I certainly don't know if that is the case with you but I thought I would suggest it in case you want to google it and see what you find. It is also known as Hughes syndrome or just APS.

Old 06-30-2008, 05:52 PM   #4
Join Date: Jun 2008
Location: further nowhere
Posts: 64
puppybreath HB User
Re: Auto Immune - Can't get a diagnosis!!

Hi, I'm new & have auto immune disease, but don't know which one. Just started seeing a pain clinic.

Old 08-07-2008, 06:29 PM   #5
Join Date: Jan 2008
Location: Kansas City, KS USA
Posts: 2
ptIam HB User
Re: Auto Immune - Can't get a diagnosis!!

Wow! You have a lot of the same symptoms that I do! I have had the same responses regarding the heart. I have told my doctors if they removed the sternum, ribs and clavicles and of course the lungs that go under them, I would feel so much better. They have "unofficially" diagnosed me with a "vasculilitis" and the pain I have is sometimes unbearable. Wonder if other people has that much pain.

Old 09-10-2008, 09:14 AM   #6
Join Date: Aug 2008
Location: newport beach, ca usa
Posts: 1
mj2521 HB User
Re: Auto Immune - Can't get a diagnosis!!

For anyone suffering with bizarre symptoms, I offer a brief synopsis and the comfort of knowing you are not alone. About 18 months ago, I developed burning pain in various spots, including underarms, chest, back of neck and lower legs. I had days where I was flattened as well as severe digestive issues. The worst were the neurological symptoms - twitching externally and internally. I had many, many tests - all negative. Of course, a neurologist came up with depression and anxiety. Who wouldn't be depressed and anxious after all this? Anyway, in desperation, I went to a Chinese herbalist who told me I had an immune disorder complicated by mercury poisoning from incorrect removal of amalgam fillings. After 14 months of herbal medication and supplements, I still have occasional burning but my energy level and digestion are better than ever. I don't eat dairy and I started on Cymbalta, which I believe has helped. The neurological stuff comes and goes, but only mildly. Don't you wonder why so many otherwise healthy people are getting these autoimmune disorders? Most MD's are at a loss.

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