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Being referred to Dr. Aiken (Read 7637 times)
nelson1600
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Being referred to Dr. Aiken
08/23/14 at 10:28:37
 
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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Bruce Hart
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Re: Being referred to Dr. Aiken
Reply #1 - 08/24/14 at 12:00:34
 
Hi Nelson. I just wanted to say that Dr. Afrin lists pancreatitis as a potential manifestation of MCAD in his huge list of MCAD findings and symptoms.

http://www.allergysa.org/journals/August2014/ThePresentation.pdf
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nelson1600
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Re: Being referred to Dr. Aiken
Reply #2 - 08/24/14 at 12:47:08
 
Bruce,

Thank you for posting that article.  That is a good read.  I have not read a ton by Dr. Afrin but think I will go look for more.  I normally stick to articles from NIH and I think Dr. Afrin has been a contributor (honestly cannot remember).  Yet this article is so well written and not as difficult to interpret for a regular guy like me.

I see you are in Oklahoma, are you by chance a patient of Dr. Miner?   Also you look fairly young, I hope you are able to control your condition.  If you do not mind me asking, do you have SM?
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Bruce Hart
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Re: Being referred to Dr. Aiken
Reply #3 - 08/26/14 at 22:21:11
 
Yes I have my 2nd appointment with Dr. Miner, on my birthday, tomorrow, when I turn 31. I haven't been diagnosed yet because I don't have health insurance and can't afford tests, but I believe I have MCAD due to many multi-system symptoms with diverse triggers. Virtually every smell instantly triggers my symptoms. Most commonly brain fog, head pressure, & headaches, but also pretty often irritated nasal and sometimes irritated eyes. I get a lot of symptoms from most things I ingest as well with the worst being severe mental fatigue.

Because of brain fog and mental fatigue I was incoherent at my first appointment with Dr. Miner and couldn't explain things very well so I mostly wasted the first visit.

Diphenhydramine seems to help a lot for my symptoms from smells, but not for my mental fatigue from foods.

But my mental fatigue is so much better after I switched from green peas to boiled porkchops. I think I have some sort of gut dysbiosis, maybe gut fermentation syndrome that makes carbs a problem for me. I've known for years that sugar triggers severe symptoms for me, but only recently learned that maybe all carbs do too to a lesser degree. So I will ask Dr. Miner about trying antifungal meds. I'd love tests to guide my treatments but can't afford it yet.

Dr. Afrin is my favorite regarding MCAD publications. He wrote the most comprehensive MCAD publication I've seen. It's in a book, but his chapter is free to download as a pdf below.

Book Chapter pdf:
https://www.novapublishers.com/catalog/product_info.php?products_id=42603

Another publication from Dr. Afrin:
http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf
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nelson1600
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Re: Being referred to Dr. Aiken
Reply #4 - 08/27/14 at 09:19:24
 
Happy Birthday Bruce!  I have a brother who turned 35 today.  I am 33 myself.  You look young in your profile photo, I wish I had that problem.  

Please post about your appointment if you are open to sharing.  I truly enjoy Dr. Miner, for every minute of time with him is well worth it.  He did an endo and colonoscopy on me last year and I was so out of it as he recapped his initial findings with my wife that he permitted her to record the conversation using the audio recorder on her phone which was priceless.  Most physicians would be skeptical.  This man truly cares, I can attest to that.  He also has a dream team support staff.  From Kelly in the front office, Susan and Angela (nurses), and of course his P.A. John.

Dr. Miner shares my sense of humor and it is refreshing to be able to break from  serious conversation with an intelligent / dry humor reference.

I hope your appointment is well and you get some answers.  I actually spent some time on the phone with Susan today getting t's and i's crossed and dotted for my Dr. Aiken referral.  Dr. Miner having spent so much time studying our disease and it's ugly forms could have been offended at a referral request, as many doctors would be.  However he understood right away that I am not questioning him or his expertise, rather after 3 years I am seeking deeper clarification and rather than going to just ANY Masto doctor, I am asking to see the leading researcher in the field; which he and his staff respect.

Good luck Bruce!
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nelson1600
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Melissa, TX
Re: Being referred to Dr. Aiken
Reply #5 - 08/27/14 at 11:26:01
 
Dr. Aiken graciously emailed me and accepted me for clinic.  Right off though he indicated he will want to repeat the BMB while I am there.  I had to repeat my original one due to lab error, so this will be #3.  Praying he will sedate me, because that is PAINFUL.

I schedule my appointment tomorrow, sounds like mid-december for time frame.
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