Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Greetings from Washington http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1334464998 Message started by Drea on 04/14/12 at 17:43:18

Title: Greetings from Washington
Post by Drea on 04/14/12 at 17:43:18

Hi!
I'm Drea. I'm from Eastern Washington, the Never-green side of the state.

In 2007 after the birth of my daughter I started having terrible abdominal pain, headaches and facial numbness. I went through gyn exams, colonoscopy, and neurology. I was told it was a benign ovarian cyst, mixed migraine syndrome and Chiari Malformation. Then I was told it was definitely not Chiari Malformation it was pseudo tumor cerbri. And then when tests for that were negative I was told I was just fat and depressed. (Yes those were the doctor's exact words ::))

Then I got pregnant with my son in 2009 and I dealt with horrible hyperemesis gravidarum, including a PICC line for 24 weeks. During that time my abdominal pain and headaches cleared up. I don't know if my body was just busy trying to deal with the baby onslaught or if the masto went into remission (which is something that could theoretically happen). But either way I actually felt pretty good during my pregnancy except for the uncontrollable vomitting and the kidney stones that developed from the long term IV fluids and zofran.

And then when my son was about a year old I started having the same abdominal pain and headaches again. And I saw the same GI doctor as in 2007. He thought Crohn's disease. But during the colonoscopy saw only healthy colon but took some biopsies anyway.

And those biopsies came back with increased mast cells.

And that was the beginning of finding answers.

The initial diagnosis was mastocystic enterocolitis. They wanted me to do a 6 week steroid taper, which I couldn't do because I was still nursing my son. So my GI doctor said "well we can do this drug called gastrocrom and h1 and h2 blockers, theoretically those should be safe for nursing". It took 2 weeks for my pharmacy to get the gastrocrom. And the drug regiment changed everything!

I wasn't 100% better, but it helped not only my abdominal pain and diarreah but my horrible back pain that I had attributed to my botched epidural was better. My headaches were better. And that's when I started researching systemic mastocytosis.

I saw Dr. Mauro at OHSU in May 2011 and he reviewed my chart and my CT scans and said "Oh, yes, clearly you have systemic mastocytosis. We have biopsy proof that it's in your intestinal tract, we can see evidence of it in your skin and your eyes. And on your CT scan there's some evidence that you may have mast cell involvement in your spine and in your spleen." He wrote a letter to my insurance defending my use of gastrocrom.

It's been so good having an ANSWER! It doesn't take any of the pain or crappy symptoms away. But at least now I know WHY these things are happening!

Title: Re: Greetings from Washington
Post by Joan on 04/14/12 at 19:33:53

I guess the same percent of the population who are insensitive and rude also exist in the medical profession. Luckily, there are also doctors who are kind and caring.

So glad you have a diagnosis, even though it wasn't what you'd have preferred. Have you figured out your triggers, esp. foods? Some people have a lot of luck with probiotics and l-glutamine supplements. Probiotics make all the difference in my case.

Did Dr. Mauro say there was anything to do for your bone involvement? I'm curious, because I also have bone issues (but not osteoporosis).

If you're still having pain, I wonder if you could increase your antihistamines to see if that helps? A number of people find their pain improves with a larger dose.

Hope you keep feeling better! If he's not already there, will you please post Dr. Mauro's information in the doctors section on this forum, so others nearby will have someone to see.

Title: Re: Greetings from Washington
Post by ruth on 04/17/12 at 04:04:11

Hi Drea, glad you have answers, it's not the end of the journey but certainly helps to know which one you are on. Could you explain the clear signs from your skin and eyes the doctor referred to? Do you have UP or have you had biopsies to confirm MC involvement? For those of us trying to figure out which 'mystery flight' we are on, hearing how others put the pieces of the puzzle together can sometimes help.

Ruth

Title: Re: Greetings from Washington
Post by Drea on 04/17/12 at 10:06:50

I flush.
I had what I now think was UP as a teenager.

As for my eyes they get horribly itchy/blurry. When I started researching all the mastocytosis stuff I picked up a ketotifen eye drop and it totally cleared up the eye problem.

For triggers, I am VERY sensitive to chemicals. Which is a problem at work, I've been thrown in to anaphylaxis once due to a cleaner and now I premedicate just to go to work. :-/ Food wise I can't eat any soy, nuts, tomatoes, vinegar, shellfish... And I eat gluten free and vegan. It's restrictive but it helps.

Dr. Mauro said that at this point he doesn't see anything to be done for the bone involvement. That without further testing we can't definitely know it's mast cell related, but that he suspects. He's going off one CT scan where my lower vertebrae are very "bright" which could be indicative of mast cell involvement. Also, that area hurts when I'm having a bad mast cell flare up.

My pain doctor says that at some point we're going to talk about spinal blocks :'( but that's when it's bad enough that I'm willing to have giant needles shoved in my back. We're so not there yet.

I'm hesitant to add any more antihistamines. I already spend most of my life in a cloud. LOL. Adding in pain medication for the worst pain has been a major break through in my treatment. Next month when I meet with my pain doctor I'm going to discuss something for daily pain.

Ugh this whole process is tiring!

Title: Re: Greetings from Washington
Post by Joan on 04/17/12 at 20:24:57

Have you tried any "natural" anti-inflammatories, like turmeric or quercetin? They help some people with pain.

Title: Re: Greetings from Washington
Post by Drea on 04/17/12 at 22:51:03

Joan wrote on 04/17/12 at 20:24:57:

Have you tried any "natural" anti-inflammatories, like turmeric or quercetin? They help some people with pain.

I haven't! I've not even heard of this! But I'll sure do some research now! I'm game for about anything at this point. LOL

Title: Re: Greetings from Washington
Post by KatFromMD on 04/18/12 at 04:58:44

To join in with Joan, I've found that both turmeric and green tea extract help with my pain/inflammation. For turmeric I just take the stuff from Vitamin Shoppe. I worked my way up to two 300mg pills three times a day. For the Green Tea extract I started with a small dose from "Pure encapsulation" (I got it at a Dr.'s office but it looks like you can find it easily online), and worked my way up to one MEGA Green Tea extract twice a day. I get that from Vitamin Shoppe.

As with anything, start out with tiny doses and work your way up. I wasn't sure these were working, but when I tried cutting back (my GP thought they might be aggravating my GI issues), I noticed a difference and bumped the dose back up.

Your comment about the Ketotifen eye drops has made me curious...I don't have itchy eyes per se, but I'm on Restasis for dry eyes. What I've had problems with since my illness began is focusing. I can focus on something clearly, but it takes work and concentration on my part and its hard for me to keep things in focus. Can you explain how your eyes were "blurry" and to what extent the Ketotifen drops help? I'd have to check with my ophthalmologist before I combined anything with the Restasis, but if it would make it easier for me to see things it would be worth asking about!

Welcome and thanks for sharing!

Title: Re: Greetings from Washington
Post by Drea on 04/18/12 at 05:53:59

wrote on 04/18/12 at 04:58:44:

I've needed glasses since I was 13. And I was getting to where I felt like I needed new glasses within a month of getting glasses. I was having trouble reading street signs, even though I had brand new glasses! It was like early morning grit that wouldn't blink away. I got the ketotifen eye drops and it was MIRACULOUS! My eyes were clear! And not itchy! And I could read signs again!

Title: Re: Greetings from Washington
Post by missybean on 04/20/12 at 12:09:23

Welcome Drea! I'm from Washington as well. West side baby! Rainy and green. Lol! Looks like our children are about the same age. First baby in 07 and the second in 2010. Symptoms of course arriving after the first child. Anyways not sure if you knew but there is Pacific Northwest Mast Cell Disorders Support Group and our leader is in the Seattle area. We just had a local meeting a couple months ago. It's nice to meet face to face with others that understand your problems. Anyways we are also hosting the Annual Mastocyotosis Conference this October 11-14th which will be in Bellevue, Wa (Seattle area). If you wanna join the local group send me a PM and I will give you the info to join. We also have a facebook group too. The PNW support group is getting pretty big and a bunch of great nice people. Welcome to this forum, it is wonderful and full of smart people with great advice.
Melissa

Title: Re: Greetings from Washington
Post by Lamplighter on 04/22/12 at 03:45:58

Hi Drea! I've been thinking about ya!