nelson1600
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Jack of All Trades & a Master of None :)
Posts: 92
Melissa, TX
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Been quiet for a long time, but that does not mean I left. I was given a diagnosis of "limited systemic mastocytosis" by Dr. Aiken after being put in touch with him via email back in 2011. He did this without being his patient by agreeing to receive my bmb results and labs including multiple tryprase.
I am in Texas and he stated he would be happy to see me in his clinic as a patient. Shortly after I found Dr. Philip B. Miner, JR out of Oklahoma City who is distinguished in the worlds of Mast Cell Disease. I felt then just like now; that I was in good hands. However I became very sick suddenly last year and despite Dr. Miner keeping me at OU running test after test along with an endo and colonoscpy, he could not make sense out of my circumstance.
With time things have become more normal, but a year later I am nowwhere near the person I was before. I have read some articles about how the disease has a pattern of progression in some cases from the NIH website, Dr. Aiken being a contributor to each one. Despite all the tests done, the only test from my original issues that lead me to SM that was repeated was tryptase which was still elevated.
Dr. Miner is an AMAZING doctor, in my case though he is not worried about the what behind my problems and focused on controlling symptoms. That is good enough for me if things are being controlled. Below is a list of most of the issues I faced and still face after last year.
1. Sweats; initially seemed to be just at nigt but has come to where I just cannot manage in the heat. Aside from major dehydration due to sweating, I sweat my clothes out within minutes. 2. Irregular sleep - only within the last few months has this started to change. But for almost a year I would awake approximately every 90 minutes after falling asleep. 3. Heart rate - my heart rate has started dropping down to and just under 40bpm when I sleep and when it happens I tremor like there is no tomorrow. 4. Weight loss - just shy of 60 lbs in less than 60 days. With Zofran and enzymes I have put back on about 15. 5. Fatty Liver (30% fatty infiltration per biopsy) with benign tumor. 6. Gallbladder stopped working and came out, but no stones. It just went defunct. 7. Massive scarring throughout my pancreas with a pseudocyst, but did not fit criteria for acute or chronic pancreatitis. 8. Massive bouts of malabsorption (distgusting and scary at the same time). 9. Inflammation throughout the GI tract with minor to mild erosion. 10. More evidence of Eosinophilic Esophogitis (on my phone and having trouble checking spelling on that. 11. Rectal bleeding. No hemroids though and it is usually fresh red blood. 12. Had a doc do a CT and said I had ulcerative colitis but Dr. Miner reviewed the film and said it was in my small bowel so not colitis. 13. Same CT shows tissue damage in my lungs, not on prior CT's. 14. Horrid leg pain with swelling. Mostly one leg at a time but sometimes both.
And after all of that there are still a couple of things that are more embarrassing then what I posted above.
Dr. Miner feels there could be multiple issues, but cannot find anything that fits and neither can my other 2 doctors.
I have not found any trustworthy sources citing pancreatic involvement with Mast Cell disease. And from what I have read it is EXTREMELY rare for lung involvement.
After initially finding out about SM, aside from flushing, skin writing, and never ending diarrhea I was fine. So for almost 2 years I was on autopilot. I won't lie, it scared the hell out of me as I began having so many problems at once and knowing I am not back to where I was before, I still have an underlying fear of what comes next.
I am hoping that Dr. Aiken can help clarify my condition and between him and Dr. Miner get me as healthy as possible. To clarify, I am not afraid of what may happen, I am afraid of not having the slightest understanding of what to expect.
I am off of Welchol and Sulcarafate (again not sure on the spelling).
I am taking 800mg of Gastrocrom daily, Viokace, just started prednisone today for the first time, ursodiol, and colestipol. Not on any h1 or h2 blockers due to side effects and no improvement in the past.
Deb, Ramona, and Lisa; I hope you are all well. I have no idea how far out Dr. Aiken books, but I am hoping it is not much worse than Dr. Miner's 3-4 month wait.
Any insight and feedback is greatly appreciated. I hope everyone is as well as can be and enjoying life today.
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