I've not been able to work, single, depleted my funds, and traveled throughout the US hospitals and still remain a "mystery." I am desperate of a diagnosis and treatment so this torture can be over... anyone else have these results or know what it could be?
- 20+ year history of chronic daily diarrhea
- Past 4 years severe flares every 5 months where I cannot leave my home at all
- Intermittent rashes, hair loss, painful periods
- In adulthood onset of migraine and increased urinary urgency
- Positive ANA for 15 years
- Eosinophils always elevated
- Alkaline Phosphatase
- CRP elevated
- Smooth Muscle Ab Scr Ser: Positive
- Anti- Nuclear Ab Scrn Ser: Positive
- Smooth Muscle AB Titer Ser: 1:20
- Antinuclear Ab Titer: 1:160
- ASMA 1:20
- Asilao GM-1 Ab IgG 1:100
- Colonscopy, Endoscopy, Sigmoidoscopy 3x each- all come back negative. Negative biopsies too
- Negative for parasites
- I've tried every diet- nothing works. I was only eating 4 foods at 1 point, still did nothing.
- I've tried every drug except the hardcore UC/Crohn's drugs (because I do not have that diagnosis). No drug works. If it does help, it stops working the more I take it.
- Have tried every natural/alternative/psych treatment- nothing works.
*Johns Hopkins put me in a research study and told me that they keep seeing patients like me with the same bloodwork numbers and they are trying to figure out what it means. But after I participated in the study, they were quick to hand me off to another hospital, so I feel like I am back at square 1 with no answers.
Anyone know what this can be? What else can I do? I'm desperate.
- 20+ year history of chronic daily diarrhea
- Past 4 years severe flares every 5 months where I cannot leave my home at all
- Intermittent rashes, hair loss, painful periods
- In adulthood onset of migraine and increased urinary urgency
- Positive ANA for 15 years
- Eosinophils always elevated
- Alkaline Phosphatase
- CRP elevated
- Smooth Muscle Ab Scr Ser: Positive
- Anti- Nuclear Ab Scrn Ser: Positive
- Smooth Muscle AB Titer Ser: 1:20
- Antinuclear Ab Titer: 1:160
- ASMA 1:20
- Asilao GM-1 Ab IgG 1:100
- Colonscopy, Endoscopy, Sigmoidoscopy 3x each- all come back negative. Negative biopsies too
- Negative for parasites
- I've tried every diet- nothing works. I was only eating 4 foods at 1 point, still did nothing.
- I've tried every drug except the hardcore UC/Crohn's drugs (because I do not have that diagnosis). No drug works. If it does help, it stops working the more I take it.
- Have tried every natural/alternative/psych treatment- nothing works.
*Johns Hopkins put me in a research study and told me that they keep seeing patients like me with the same bloodwork numbers and they are trying to figure out what it means. But after I participated in the study, they were quick to hand me off to another hospital, so I feel like I am back at square 1 with no answers.
Anyone know what this can be? What else can I do? I'm desperate.