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Sunday, February 7, 2016
Is Sarcodosis The Cause of My Many Symptoms?
I have an autoimmune nightmare without lupus thank GOD. I HAVE ran a persisitant fever of 100.6 on a regular basis since 1988. I have rheumatoid arthritis, hypothyroidism, anemia and frequent neutropenia, vascualar or migraine headaaches. An abnormality in the left mastoid bone that has persistantly shown up on ct that was not there before 2001 but no one cares. I had a gastric bypass 1/3/03 that left me unable to absorb food or fluids orally even though I can eat but it usually makes me so nauseated I don`t eat much. I am 5 ft 7 and on tpn with the d6% the lowest available due to being a diabetic. On october 25th I began having unbearable pain in the long bones of my body. My blood counts were low and I was dehydrated but the doctor who really doesn`t want to be bothered but he is the only one who does TPN and he is an expert on that. He ordered a 20,000 unit procrit injection on 10/28/08. It made me feel much worse and I even went to the ER last week but they did not help me but it showed my white count was 4.2 and the others were almost normal so apparently it worked. I had a wonderful internal medicine dr until he left the area as of Dec.31,2006. He said I had enough specialists that I did not need and interest. He was sadly mistaken. I go from one of my specialist to the other however often they say. Rheumatologist, gastorinterologist, opthalmologist every 6 month. I go to the neurologist twice a year because I had an isolated seizure 1/16/08 and my gynocologist just to name a few. The doctors look on the computer and see all the meds I have from different doctors and accuse me of Doctor shopping. God knows if I could find an interest that I would take care of myself as a whole person that would be the best thing I could hope for. All the interest in this area are leaving and the ones that stay do not admit to the hospital they use hospitalists. I fainted on 10-15-08 my blood counts were really low and i was dry and had fainted several times that week. There was absolutely no narcotics in my system. My husband found me sitting up against the side of the bed with my head down and I had lost my airway. He had been told by me to never call the ambulance again but he couldn`t do it. He laid me down I was not breathing and I had no pulse. He did cpr for 10 to 15 minutes before the first responders came in with an ambulance bag and the 100% oxygen revived me by the time I was in the ambulance and at first not knowing why I was in ambulance on the way to a helicopter 1/5 of a mile down the road I refused to go but to appease my family I went. They did an ekg ct head cmp and cbc and a drug screen. All normal; They said I could go home and I said o.k. I am ready to go home, sorry this is so long the effort of sitting up at the computer has put me in a cold sweat all over me and the room is very cool. There are 33 different doctor given dx for me and I really don`t have anyone to take care of me doctor wise. TPN doc only wants to take care of that and nothing else. I have heard it from every internist I`ve gone to see. You are very sick and your care is very complicated and it is beyond my scope of care. I wish if GOD was ready for me I had gone on 10-15-08 and I know that is selfish but I am useless. I am not a wife to my husband, not a homemaker or example for my daughter. I just can`t help but wonder have they missed something that could be at the bottom of all this suffering? Too tired, too short of breath and too much pain and way to much medicine that cost dearly but I am usually too sick to take it...If you have any ideas I would be ever so grateful because I really believe in Heaven and hell but every day of worsening suffering with no hope of medical help or even caring is taking its toll. Please reply.
There is little information provided in your correspondence relating to the previous diagnosis of sarcoidosis and how this diagnosis was dismissed as a probable cause of your current symptoms. It would be important to consider if you do indeed have sarcoidosis and whether it is active.
I would recommend carefully collecting and organizing the records and tests that have been performed to date, including those tests that led to the diagnosis of sarcoidosis in 1988. Usually a biopsy of affected tissue is needed to confirm the diagnosis of sarcoidosis.
Once you have compiled this information, you can then seek the advice of a physician experienced with sarcoidosis to determine if sarcoidosis is the likely cause of some of your medical problems. The Foundation for Sarcoidosis Research website includes a link to doctors who are experienced with sarcoidosis based upon their location.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University