I've been searching for answers to my health issues for YEARS!!! It started out over three years ago when I had flank (beneath the rib cage area) pain. A Gastro doc did an endocopy and found crystals from the Gallbladder so he recommended I have the gallbladder removed. DONE! Still had the flank pain and was told by surgeon that it was just scar tissue from the surgery. That's a probable answers but was WRONG! Let me state right now that over the years I have gotten MORE frustrated with doctors and people blowing me off. I no longer blame 'most' of the docs for our bodies are very complex and in my search for answers I've learned that even the docs that meant well and tried to help me and were wrong they were up against a very rare (or perhaps not heard of often) disease. Here's the run down:
For 10 YEARS I've had night sweats. Hormone levels tested normal.
For over 3 YEARS I get skin rashes when I'm in the sun and sweat or when I take a shower.
For 3 Years I've slowed exhibited shortness of breath with even mild activity. Sought out Pulmonary Specialist but nothing was found.
2007: Sharp painful upper, back, right side pain sudden! Gallbladder removed but flank pain remained
2009: Chronic/debilitating diarrhea, flank pain, stomach distension and pain; On/Off stomach issues with eating (CT scan showed inflammation colon; Colonoscopy was performed but nothing found) I searched for second and third opinions to have another GI do a colonoscopy/endoscopy and found Lymphplasmatic Infiltrates from my stomach all the way to my Colon. Was DIAGNOSED with Microscopic Colitis FOUND THIS WONDERFUL website forum
Doc that diagnosed me with MC didn't know how to treat it so he referred me to a specialist in Birmingham, AL. Prior to seeing that doc I heard someone on here (I think it was Mary Beth) say something about Mast Cells. I didn't know what that was and started researching it and going OMG OMG I fit so many of these things. So when I saw doc in Birmingham I asked him about this Mast Cell and he was HIGHLY impressed and agreed that it was worth running some tests. Blood was drawn and a 5-HIAA (24 hour urine) was ordered. Doc didn't tell me I had to avoid certains foods and such for the urine test. All came back fine with exception of an elevated SED rate (inflammation somewhere). He treated me for MC with WELCHOL which works great but has raised my blood pressure and heart rate(or it's coincidental that it's raised on this med) My flank pain has become debilating and my stomach pain has grown, bones and joints hurt terribly. "D" is nicely controlled and a major relief. My primary care doc ran more tests and was concerned that I have Lupus since now I have a permanant flush(redness) with veins on my cheeks and permanant flush on my chest. I was one point away from a positive and my levels for rheumatoid arthritis are also one point from a positive. Rheumatoid docs (2 now) she has sent me to say a negative is a negative and nothing they can do. Back to primary doc! She ran some xrays and ct scan. Found cysts on both ovaries and enlargement of one ovary, chronic degenerate disc disease in T zones (neck) and C zones (mid back) with an osteophyste (small boney growth) in the C zone. Now in my research of Mast Cell I learned that there was another condition that mimics symptoms of Mast Cell called Carcinoid Cancer or Carcinoid Syndrome (symptoms of the Cancer) This Carcinoid Tumor releases different chemicals/hormones which can cause havoic with your system. "I" insisted on two blood work tests at this point. A CA-125 (cancer marker) and a Chromogranin A, or CgA (Carcinoid Tumor marker). I tested high only for the Chromogranin A. Here's where I am today.
I have Carcinoid Cancer. CT scan with contrast of the chest area has found activity in both lungs, aorta, and lymph nodes. I just finished a three day Octreotide Scan to locate any and all tumors throughout my body. I get results on Monday! Carcinoid can kill you so the key is EARLY DIAGNOSIS!!!!! The problem is that many doctors are not aware of it or don't think of it since symptoms mimic that of so many other disorders/diseases.
Here's the deal folks........I'm not saying that everyone that has the symptoms I've had has this Carcinoid. But if you are one of the unfortunite people that can't seem to find solutions and relief and have multiple syptoms going on.........KEEP PUSHING! Your life could depend on it. Be your own advocate, do some research (but be careful with researching on your own. It can mislead you and scare the poop (no pun intended) out of you). But by all means ask for additional tests and when you run into a doctor that doesn't want to help, move on and find another. I've seen 13 different doctors in the past year. You will get discouraged, you will be told many things by many doctos (ie: "maybe you should seek counseling as stress and emotions can make you very sick" "maybe you could try an acupuncturist" and more..) The important thing is to know your body and listen to it. My body has been screaming at me and I've listened and I know when my body is sick (not my mind or emotions
) As chronic diarhhea is a common side effect with many diseases as that of Carcinoid, I wish that GI's would become more educated on Carcinoid. Chron's is one of those diseases that some ppl get mis-diagnosed with. So if you are in doubt of your diagnosis and exhibit 'other' symptoms ie: weight loss/gain, shortness of breath, rashes, bone/joint pain, diarhhea, flushing, and more...what's it going to hurt to ask for more tests like the Chromogranin A blood test. Hope this information can help someone if not yourself maybe someone else you know that is still searching for answers.
Good luck!
