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Avatar universal

SLE, pancreatitis, Sjogren's Syndrome , Chron's Disease, Hashimoto's Thyroiditis, vasculitis of the breast

HELP!!!!!!!!! Over the last 17 years I have been - (and all are confirmed except the pancreatitis) with all of the chronic and incurable diseases listed in the title. I also have an extremely bad (painful) back and was even confined to a wheel chair for a few weeks until I received successful epidural blocks.

Now, I am being treated for Pancreatitis which I first heard of 3 weeks ago when I finally went to the GI doc (again). BTW - I am a GI docs dream constant cash flow. I have been so sick I could not get the scan or bloodwork he ordered until my 12 year old called 911 and I was taken to the ER.

Since then, I have been on two different antibiotics (for the last week). I discontinued Imuran bc I thought that would help me recover. However, I am not any better. Nausea, pain, low fevers and disgust are constant. I vomit but since I cannot eat well it is mostly acid. I am extremely depressed.

I finally talked to the nurse at the GI docs office today and she has not seen the ER records and did not know anything about me although I called last week as instructed. This is typical in this area. I think I see one of the better GI's.

Is there anyone like me? What should be done? Is this my Rheumatologist's area or the GI doc? They will not work together here. The Chron's Disease showed me that. My Rheumy has already told me that I am too ill for her to treat but I live in Naples, FL and the other two Rheumy's in this county have no respect. I have seen one and forget it!  I was diagnosed with Lupus by Dr. Michelle Petri at John Hopkins  in Baltimore when my heart and lungs were first attacked. I have been trying to get an appointment to see her again but in the last 6 months have been unable to get anywhere as I have not been there for awhile. But - I was in her study, that should count for something. The problem is that you have to be your own doctor or there is no care available. It used to be better off season but not anymore. The tourists are gone so the Doc's cut their hours. Thank God for the net as at least I was able to get some basic info., but not relief.

Please help me. Bless you.







This discussion is related to Pancreatitis, lupus and renal tubular acidosis.
3 Responses
Avatar universal
Pancreatitis would be best treated by a gastroenterologist. You should still see a rheumatologist for the inflammatory processes related to lupus. I am sure that you are well aware of the toll that lupus takes on your body and your life. It is common to see pancreatic and liver involvement with Lupus. Since pancreatitis is such a serious problem, I think that you need someone who specializes in pancreatic disease.
Avatar universal
i have just come across your post and i really felt for you for what your going through. i also have sjogren's syndrome,lupus, fibromylgia,celiac disease. i understand you pain and frustration with these condtions and with the medical world in general.  i am 29 an i spent all of my twentys looking for why i felt like crap very day. it blows my mind that doctor are the only place that provide a service and will treat people with no respect, but that seems to be just fine. i have seen more doctors in my life than i can count and i have a feeling that may be that same for you. what has worked for me was i finally found a great family doctor, that listens, has understanding of my condition,caring. for me this has made the world of difference. i still see a rheumatologist every six months. i also just wanted to through out there has anyone ever talked to you about gluten? i am on a gluten free diet. the only reason i ask is because of pancreatitis. alot of the symptoms can over lap. it is very common for people with autoimmune diseases to have a intolerance gluten. i hope this was helpful
Avatar universal
Hi

i am 31 and i have all kinds of problems, its hard when people have more then one illness as it gets complicated, drugs for one illness may be bad an worsening for the other illness you have, so yeah, i have been running around for help from drs they dont seem to be off much help in uk, thinking of going abroad for better checks and treatment,

you mentioned gluten intolerance is linked to pancreaitis?

i have heard its linked to some liver, chronic diahrea too, i have chronic diahrea, also problems with liver results for many years and now otop my pancreas is under investigation, so it could very wel be gluten intolerance causing all this, also sugar intolerance too, the stomach symptoms you mention could be linked to h.pylori bacteria too, nasty bug.

imn going to try a gluten aand sugar free diet see what happens
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