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Diagnosed with Crohn's but something is missing.
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Diagnosed with Crohn's but something is missing.

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.
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4 Comments
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Avatar_f_tn
have you been checked for lupus? you need to have lupus titters done to rule that out, it does affect your joints, cause fever, etc.  sun makes it worse
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Avatar_f_tn
Have you got a major infection going on in your body? I have had a fistula before and have another from Crohn's disease and each time, I have major swelling, my legs hurt continuously with pain and then it begins to radiate all over my body. My body begins to retain fluids and then I hurt all over including my joints. Have they completed an MRI of your body? This may help the doctors rule out any issues like fistulas that have went to other organs in your body. I wish you the best of luck in finding out what the issue is.
Also, have you been taking B12? My doctor not only has me taking B12 injections, but I also take Calcium and Vitamin D. From my understanding all of them work together to help each other be absorbed into the body more easily.
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Avatar_m_tn
They just completed an upper and lower scope on me and while my intestines are clear, my stomach and esphogus are swollen and show signs of disease. They also removed 16 pulups from my large intestine, 4 from my esphogus and 3 from my stomach. But my Crohn's Doc is pretty sure I am in remission. The problem is, I sure don't feel like I am.

I went out for a walk today and after 30 minutes my feet swelled up so bad I could not get my shoes off. I had to cut them off. I basicly had to crawl home.

Now my hands are so swollen I can not shut them or grip anything. I have to hold my glassof water with my wrists and am now poke typing one letter at a time. My hands look like grapefruits. I can not even go to the hospital, because the last time they could not get an IV in as my whole body was swollen and in the end they just gave me a bunch of Prednisone.

This *****!
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Avatar_m_tn
I was tested for Lupus and the first test showed positive, while the follow tests showed negative.
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