I was diagnosed with Crohn's but something doesn't seem right. Now they believe their may be a secondary autoimmune disease, but after several tests I still have no answers. Does anyone have any ideas?
I am experiencing extreme fatigue, nausia, diarrhea, chronic severe abdominal and joint pain, swelling in all my joints, feet, hands, arms, legs and neck, swelling in my eyes, swelling in my tear ducts, dry mouth sometimes and then extremely active salivary glands, persistant fever 101 to 102 at least 2 to 3 times a week, sleep 18 to 20 hours a day, can not stay awake, tingling and loss of feeling in right side. Sudden increase in blood sugar levels, 6.9 on H1C test, Vitamin D level is 10% of normal, testasterone level is 5% of normal. Skin Rash on legs and arms. Intestines are now clear of disease, but stomache and esphogus are not and show swelling and scarring. Kidney Stones - 100% Uric Acid Stones along with sediment in urine. It's like urinating and passing red sand. It is incredibly painfull. And last but not least memory loss.
Tests: 2 Positive Results for Lymes, 1 Negative for Lymes (Specalist said there wasno way for me to have Lyme Disease), 2 Positive for MS, 1 Negative for MS (Specalist said there was no way I have MS), heart checked 3 times and is in great shape, arteries checked for bloackages and tests show all arteries clear, tests show decreased nerve function on right side, tests show large amounts of swelling in the central nervous system, Genetic test for Crohn's is positive, tests show negative for RA, but show extreme swelling in joints, arms, legs, feet, neck, Tests for Lupus have shown negative, Tests for fibro have shown negative
The only drugs which seem to help all sympthoms including pain are steroids. Have tried Remicaid, Hummira, and Cimzia plus MEthotrexate, Asacol, MP6, Immuran, Hummira worked for 11 months, none of the other drugs have worked at all ffor suppressing sympthoms. Prednisone and Tordol work, but have horrible side affects. Currently taking Morphine 380 MG a day for pain, only makes pain bearable does not completely control the pain. Phenegren for nausia, 50,000 UI Vitamin D, 25MG Testasterone Patch, Lexapro, Nexium, Cimzia, Prednisone.
My optomologist seems to believe that I may have Sjorgen's Syndrome, but I would expect dry mouth all the time and dry eyes all the time, not just part of the time.
I have not been able to work for 2 years and my days are spent in pure hell. The pain is horrible, but the fatigue is the worst. I just can not stay awake. It's maddening. It's like being drugged. At first I felt it was the Morphine so I stopped taking it, The onlything that changed was waking up to such pain I would vomit and fall back a sleep. It's pretty obvious something is going on with my central nervous system and it is more than likely an autoimmune disorder, but no one has any idea. I have read through some posts which show similar sympthoms, but no one has an answer. Right now my biggest fear is having my wife or kids find me dead.
I know my doctors are just missing something. If we could just find the one sign or sympthom.