Mast Cell Disorders Forum - New, living in Oklahoma

amyc

Rookie

Offline

I Love YaBB 2!
Posts: 2

New, living in Oklahoma
03/04/12 at 05:53:36

Hi everybody! I guess I'll start by listing symptoms and how I got my diagnosis. I went anaphylactic in post-op recovery after a partial hysterectomy in 2006, and was told I was allergic to demerol. I thought that was strange since I'd taken it several times before with no problems, but didn't worry about it.

Then we moved states and I just had a feeling like I could never catch my breath, and I had a massive rosacea flare with redness, bumps, and itching all over my face. The next year we moved again and my symptoms disappeared, which was great.

About a year later I got food poisoning and was given Cipro. On day 3 I turned red like a tomato, spiked a fever, and had very high liver enzymes. The doc tested my for hepatitis and told me I'm allergic to Cipro. I had taken Cipro several times before and had no problem, so I kinda wondered how I was suddenly developing medication allergies in my 40s just out of the blue, but no doctors seemed too interested or concerned, so I didn't worry about it.

Then we moved to Oklahoma, and I developed asthma, frequent diarrhea, almost constant upper right quadrant pain, and my rosacea came back big time. I was tested for all kinds of things, treated for H. pylori (and developed C diff because of it), had my gallbladder removed, and had no improvement in my symptoms. I also developed interstitial cystitis, so if I get at all low on hydration, well, it feels like I have a bladder infection and get blood, protein, white blood cells but NO bacteria in my urine. Meanwhile my son had developed an enlarged liver and spleen and polycythemia, and was sent through pediatric hematology/oncology, and got no diagnosis except for "he looks healthy and none of the tests show cancer or mutations in his hemoglobin structure."

Through lots of google searches I found information about mastocytosis and mast cell disorders. I am now a patient of Dr. Miner's in Oklahoma and am hoping he can find a medication regimen that will help me. I've had my initial office visit and colonoscopy/EGD with biopsies and have a follow-up appointment in April.

Back to top

IP Logged

Joan

FORUM ADVISOR

Offline

Posts: 1502
Colorado

Re: New, living in Oklahoma
Reply #1 - 03/04/12 at 06:08:16

Hi Amy and welcome to the forum!

Sounds as if you've had a rough time, but you should be in good hands with Dr. Miner. Lucky for you to live near a mast cell specialist!

Since both demerol and quinolone antibiotics can cause mast cell degranulation, it's not surprising you reacted, if you have a mast cell disorder. However, people don't always react to a medicine the first time they take it, but do the second or third.

Sometimes allergens, such as pollens, mold, dust, etc., can be mast cell triggers. Weather fronts can cause symptoms, too, so one of those might account for the change when your symptoms disappeared. I'm so much better living in Colorado than I was in a rainy climate because mold is a huge trigger for me.

Let us know how you're appointment goes and, if you don't mind, share with us the medicine regimen he gives you. Everyone likes to see what different doctors have to offer.

Back to top

Joan

IP Logged

amyc Rookie Offline I Love YaBB 2! Posts: 2	Re: New, living in Oklahoma Reply #2 - 03/04/12 at 06:32:55 Hi Joan, and thanks. My husband can retire from the military this summer, and I would love to move to the Denver area. I feel at least 10 years younger there just because I can breathe. Here in OK I often feel like I'm wearing an ace bandage wrapped around my ribs. Do you have a mast cell doctor there in CO?
Back to top	IP Logged

Lisa

FORUM MODERATOR/ADVISOR

Offline

I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil

Re: New, living in Oklahoma
Reply #3 - 03/12/12 at 02:31:27

Hi Amy!!

I am VERY sorry I didn't get here to see your post earlier! I've been very busy lately!! First I want to say WELCOME! I hope you feel at home with us and that we can help you find some answers.

Amy, I have a feeling that your case of "food poisoning' was not that. I too confused 3 seperate cases of what I thought was food poisoning at the time. Each case involved cheese and travelling and with each case nobody else got sick and we were all eating the very same foods!! It was only later, looking back at the situations and my present reactions to cheese and stress that I know that I was in truth going through very severe anaphylaxis and since it triggered major reacting, it didn't resolve it self in just an hour of my body expelling the undesireable food item.

And when you put an antibiotic on top of it, you've got your symptoms totally taken acount for in what you describe. So, I have a feeling you were in truth, in anaphylaxis due to whatever you were eating and the antibiotic only showed its activity later because it was stirring up more trouble for you. I've seen this happen before.

Amy, I'm very concerned for both you and your son, for he sounds like he's got more going on with him than polycythemia. Dr. Afrin published a case report of MCAS desguising itself as this. I think you both really must have some serious investigating for mastocytosis for this needs to be ruled out, or diagnosed and treated as such. I would suggest, Amy, that you speak with Dr. Castells about your son and yourself. He may not be a full blown mastocytosis patient, but mastocytosis is known for causing enlarged livers and spleens and this needs to be looked at accordingly by pediatricians who know mast cell disorders so that they can discern what the root cause of this really is.

And it's not just your son who needs to be seen, but yourself as well. And I wouldn't waste a whole lot of time trying to find doctors, I would speak with Dr. Miner and ask him to give you a referral to Dr. Castells and then worry about finding the appropriate doctors after you get back home. I don't want to startle you, but when kids are involved, you don't have the time to be running around in circles with doctors and obviously you've run around long enough.

So, if you want Dr. Castell's contact information I'll be happy to give it to you. Yet I would also speak with Dr. Miner. Everyone speaks so well of him and say he's very open to masto patients and I'm sure that if you explained to him what you're needing he'll be more than happy to send you on to Dr. Castells.

I hope this helps!

Lisa

Back to top

Don´t forget, there is so much more to life than being sick!

IP Logged

Aggiegirl

Rookie

Offline

I Love YaBB 2!
Posts: 19

Re: New, living in Oklahoma
Reply #4 - 03/13/12 at 03:04:09

Welcome Amy! I'm sorry I didn't see your post before now. I also live in Oklahoma and am a patient of Dr. Miner. I think he's WONDERFUL!!! I honestly feel like he saved my life. Most of my symptoms involve the stomach and intestines, along with bone and joint issues. The people on this forum are wonderfully understanding and very supportive! Hang in there and I will keep you and your family in my prayers.

Back to top

IP Logged

redbird Guru Offline I Love YaBB 2! Posts: 862	Re: New, living in Oklahoma Reply #5 - 03/13/12 at 03:14:02 wellllllllllllllll I am seeing some folks from Oklahoma this morning...are any of you close to me down in the south part of the state..125 miles south of OKC anywhere close redbird
Back to top	IP Logged

Aggiegirl Rookie Offline I Love YaBB 2! Posts: 19	Re: New, living in Oklahoma Reply #6 - 03/13/12 at 13:31:48 I live in nw oklahoma, about 130 miles from OKC.
Back to top	IP Logged

hope Rookie Offline I Love YaBB 2! Posts: 19	Re: New, living in Oklahoma Reply #7 - 05/16/13 at 17:30:41 I'm in NW Oklahoma and am a patient of Dr Miner.
Back to top	IP Logged

Bruce Hart

Guiding Light

Offline

Posts: 101
Oklahoma, USA

Re: New, living in Oklahoma
Reply #8 - 05/18/13 at 20:44:41

I live in Oklahoma too and am considering going to Dr. Miner later, but I'm going to see how well I do on OTC meds first.

I just wonder how he would be for someone like me who's major concern is nearly everything I inhale triggering my symptoms. I do have intolerances to nearly everything I ingest as well but since I can tolerate a few foods, and easily have control over what I ingest, it's nothing compared to my inhalant triggers.

I'd also like to know if he diagnoses MCAS. If you guys don't know then I'll just see if I can find out by calling him later.

Back to top

IP Logged

hope

Rookie

Offline

I Love YaBB 2!
Posts: 19

Re: New, living in Oklahoma
Reply #9 - 05/31/13 at 17:36:24

Bruce, if you are having GI symptoms, he will see you. He has given me a tentative diagnosis of MCAS.

I didn't need a referral to see him, but he is booked months in advance. I would suggest getting an appointment now just in case the OTC meds don't make enough of a difference.

When I first called to see him, the wait was about 4 months, though they did move me up a couple of times so I ended up waiting about 2 months.

Back to top

IP Logged

Jennifer R.

Tutor

Offline

I am not a mushroom!
Posts: 30
McAlester, OK

Re: New, living in Oklahoma
Reply #10 - 06/17/13 at 10:19:50

I live in Southwest Oklahoma and am a patient of Doctor Miners as well. So far diagnosed MCAD, not which spicific one yet but I have too many mast cells in my intestines and have elevated liver enzymes all the time, in fact your story sounds a lot like mine. I seriously thought Oklahoma was trying to kill me when we moved here 8 years ago. LOL
I just started Gastrocrom today for my symptoms. I think he's a great doctor and am so glad I found him.

Back to top

IP Logged

	Welcome, Guest. Please Login
	Visit YaBB today