Immune Mystery

[ImmuneMystery]

I need help finding out what is wrong with me. I have been to several doctors over the past 9 months and nobody has been able to figure out what is wrong. All the doctors agree there is something definately wrong, but have not figured it out. I have literally had dozens of tests. Two main symptoms are painfull exessive swelling of multiple joints to the point of immobility, knee, big toes, ankles. Intestinal issues are loose stools, diarrhea, anal fissures(past), abdominal pain, gerd, mouth ulcers. As well i have fatigue, and experience very bad unexplained muscle pain in the arm, legs, and back. calf muscles extending to achiles tendon being the worst. I have been told that i DO NOT HAVE: crohns, lyme, lupus, celiac, behcets. I am really scared of this condition, not knowing what it is is making things worse. Most recent doctor treating me believes i may have lyme and has sent a western blot off, with no posetive elisia. She also believes that my immune system may be reacting to some sort of insult in my body, and that i may have some form of IBD. Any ideas, suggestions, advice would be greatly appreciated. I can provide a list of all diagnostic tests and procedures if necessary

[karajo]

check this out, this maybe a possibility.
http://www.medhelp.org/medical-information/show/433/Sarcoidosis

The IBS may be a symptom related or non-related.  

Let me know what you think.  There is actually a new forum on medhelp for this condition.

[karajo]

I will have to think on this some more.  Perhaps your dr. could test for other tick borne illnesses (Rocky Mountain is one, I know there are others I can't spell or pronounce)  Another thought is chronic fatigue.  But I'll try to do more research.  

Praying for you, Kara

[ImmuneMystery]

Did any of these tests bring to mind any ideas. Maybe any other tests i should request or repeat?

[ImmuneMystery]

I was on 10,000 units of vitamin D for 2 months. This is a list of the tests I have had.

DHEA-S blood test
FSH blood test
Immunoassay
Immunoglobulin blood test
LH blood test
Noninfectious antibody test
Outpatient consultation
Total testosterone blood test
TSH blood test
Vein puncture
Vitamin D-3 blood test
ANES UPPER GI ENDOSCOPIC PROXIMAL TO DUODENUM  
Colonoscopy
Special staining method
Surgical pathology  
Upper GI endoscopy with biopsy
Outpatient consultation
Antinuclear antibody (ANA)  
Bacterial culture  
Body fluid cell count
Complete blood count  
CRYSTAL ID LIGHT MIC ALYS TISSUE/ANY FLU
ESR test
IADNA BORRELIA BURGDORFERI AMP PRB
MUCIN SYNVAL FLU ROPES TST  
Rheumatoid factor assay
Smear staining
SPEC GRAVITY XCPT URINE  
Lyme disease antibody test
ARTHROCENTESIS
Emergency medical care  Emergency medical care

I do not get facial rashes ever, i do get blistery rashes on my fingers and toes, doesnt seem to have anything to do with the sun. The last time my ankle swelled up i got a bad rash all over my ankle and foot that looked like hundreds of tiny bug bites.
Knee X-ray

[karajo]

Yes, low vit D seems to go hand in hand.  Did anyone put you on prescription D?

I would like to see what all they have tested.  That way I or someone else might have a suggestion.

[ImmuneMystery]

I also have noticed that alot of Lupus patients have low Vitamin D. I have very low Vitamin D as well.