autoimmune disorder

[pgstn]

I am amazed at how many people suffer with an undiagnosed auto immune disorder and how quick the medical world is ready to write you off as either a drug seeker or psychosomatic neurotic patient.  I worked as a nurse for over 30 years.  In 2004 I had the flu and a month later developed all kinds of problems from growths, fatigue,ulcerative colitis,anemia, muscle and joint pain.  I was then on a treadmill to doctors offices.  I was told there was nothing wrong to Sarcoidosis, to Rheumatoid and finally an undiagnosed autoimmune disorder.  Four years later, I am still on a treadmill to doctors but in a different state.  The last doctor asked me if I have hallucinations.  Guess I knew where he was coming from!   I always tell doctors that I do nothing textbook. In 2005 I had multiple blood clots to both lungs. For 5months I had complained that I was short of breath.  I was told it was my weight gain from steroids because all my tests were normal.  The did a CT of my lungs and I was suddenly and emergency.  

So, everyone that is out there, I know exactly how you feel and know first had how the medical field views people with complaints that they can find no physical abnormality for.  Just hang in there and take one day at a time.  I found writing a journal helped me because I would get to a doctors office and could not remember how I felt or what problems I had 3 months ago.  Now, I read up the day before and list the problems that need attention,  The medical professional then says it is not his specialty and tell someone else.  It gets VERY frustrating.

[pgstn]

Hi.  I had one doctor in Florida who really listened and worked with you and did not think that symptoms were all in ones head.  In Florida I had been there for 23 years and knew all the doctors and who to seek out. In TN I dont have that on my side.  I have had to repeat almost every test and others added.  A doctor last week asked me if I hallucinate.
Guess I learned real quick what he thought of my complaints!!!!

I have more empathy for anyone who lives with pain or symptoms that go undiagnosed and untreated.  I cant imagine what happens to people who do not have a medical background.  It is scary.  I wish there was a way that I could develop a website to answer every day questions about the things that doctors say  and what they mean by the big words they use.  Even what to expect from treatment or surgeries.  I am not that
computer savvy.  

Hang in there.  I hope you and your daughter can find someone to give you answers and better yet give you some relief from your symptoms.

[Grammy7]

Thanks for sharing that.  My daughter is also a nurse and is having the same issues and I am also.  She lives on the west coast and I live on the east coast and the medical profession is the same everywhere I guess.  Just send you off to the next specialist.  Are there any out there that really care enough to get to the bottom of things?  It's one of the horrors of being sick.  It's humiliating and exhausting.  

[cat1203]

my heart is enlarged too i don't know if it is from my mitro valves or my immune system.  i have asthma also  i hope you don't have to take that blood thinner long i took plavix and it almost killed me.  isn't there a better medicine for blood thinning than that one?  i was on it about a month couldn't stop bleeding even through my skin.  the plavix made me throw up blood.  

i took estrogen for years and ended up having a hysterectomy.  i had endometreosis.  i think the estrogen screwed up my whole body.  i am glad you could get disability.  i go out into the sun and my blood comes out of my arm.  i am on predisone though that might do it.  

i ended up with a venous angioma in my head and they said i could drop dead now or live to be 100.  i believe in destiny. you have to if you want to survive.

[pgstn]

I like your screen name!  I had multiple small blood clots filling both pulmonary arteries.  I had it for so long that the right side of my heart was very enlarged from trying to pump blood.  The never found any cause.  I had CT, MRI, Ultra sound. They were all normal except the MRI indicated a "few" got through and caused a "little" brain damage. They did find that my clotting factors in my blood were abnormal-so I am on rat poison (coumadin) for life.  I never understood how I made it 55 years without clots and I smoked AND took estrogen.  The docs say it happens that way.
I am a little bitter because it took away my career and put me on disability.  That income is FAR from what I was making as an RN.  I thank you for your comments.  

[Sheilathatsme]

Were the blood clots in your lungs large or small. I read somewhere that smaller blood clots in the lungs can be a sign of vasculitis.

I too have been ill for many years and viewed as depressed or a hypochondriac. I was diagnosed with Fibromyalgia in 2004 and now 4 years later my ANA level is starting to creep up. I was told by an Orthopedist many years ago that he thought I had an Auto-immune Disease and that with time it would show in my blood work and to not give up until I had a proper diagnosis. So far, he has been the only one who seemed to know what he was talking about and rheumatology wasn't even his field! Because he saw the signs and properly noted all this in his notes and records I was approved for disability at a faster rate than most people. It only takes one doctor to make a difference. God Bless!

[PlateletGal]

I also understand where you are coming from. When I was only 18 years old, I had a severe case of mono. After my mono episode, I was always ill and my symptoms included frequent infections, muscle aches, headaches, extreme fatigue, etc. etc. It took me many years to get a "CFS" diagnosis and yet I have a high ANA titer. I read later that many CFS patients have some autoimmune problems.

I like reading Dr. Garth Nicholson's research on autoimmune illnesses. This man has nailed it down to a "T"... in my opinion... but after reading tons of information and talking with many other people who are in the same boat.

[cat1203]

I  understand where you are coming from for years it was all in my head, yes, they were right in a way it showed up on an MRI.  I have MS, Temporal arteritis, and vasculitis.  I also have a seizure disorder from a venous angioma.  I had a tia in 2000 i was on a high dose of steroids and bingo tia.  

I have had one heart attack and got an acute infection from surgery on my mouth, tooth pulled and had my two left valves left with regurgitation.  My sed rate went up and something else went down.  My lipase went sky high and I got pancreatitis from an ulcer.  Never heard of such a thing.

I get gamma gobulin once a month to booste my immune system.  You know if they caught this when I was in my thirties I probably would have been better off today.  But no it was all in my head.  I was depressed they said.  I wasn't depressed I was ill and couldn't walk nor dress myself.  I have MG too.  I hope you find more help than I did.  I also have diabetes.  Your immune system can go hay wire and kill you.  Evidently mine doesn't like me much.