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Autoimmune Disorders Community
This is an un-mediated Patient-to-Patient Forum only. This forum is for questions and support regarding Autoimmune topics such as: Acute disseminated encephalomyelitis (ADEM), Addison's disease, Ankylosing spondylitis, Antiphospholipid antibody syndrome (APS), Aplastic anemia, Autoimmune hepatitis, Autoimmune Oophoritis, Celiac disease, Crohn's disease, Diabetes mellitus type 1, Gestational pemphigoid, Goodpasture's syndrome, Graves' disease, Guillain-Barré syndrome (GBS), Hashimoto's disease, Idiopathic thrombocytopenic purpura, Kawasaki's Disease,
Lupus erythematosus, Multiple sclerosis, Myasthenia gravis, Opsoclonus myoclonus syndrome (OMS), Optic neuritis, Ord's Pemphigus, Pernicious anemia, Polyarthritis, Primary biliary cirrhosis, Rheumatoid arthritis, Reiter's syndrome, Sjögren's syndrome, Takayasu's arteritis, Temporal arteritis, Warm autoimmune hemolytic anemia, Wegener's granulomatosis
autoimmune disorder
by pgstn, Jul 16, 2008 02:30PM
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.
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.
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.
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.
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!
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.