Hi All,

It’s great to find this forum, and thanks to Deborah for it!

For ten years I have been suffering from night sweats with autonomic features (heart racing) that would awaken me several times a night. At the worst, my eyes would water, nose run, and my intestines quivered and I would have diarrhea.  Various specialists/strategies, including HRT (I was in perimenopause, then menopause 2006) did nothing to resolve them. I was never a highly allergic person, a little hay fever in May-June. I did over those ten years have several bouts of bad hives (Wellbutrin, Chantix, and handling moldy horse grain—Prednisone and Benadryl for weeks would resolve). But it was the terrible nights that were the worst. I was NEVER rested.

In 2010, things got worse. I was extremely ill for four months with nausea, fatigue, malaise, autonomic dysregulation (including Raynaud’s) , and hives that would come and go each evening. I came out of that hypersensitive and/or allergic to foods (chocolate, aged cheese, alcohol, mold, etc.), chemicals (perfumes, couldn't use the face cream I'd used for 20 years!, etc.) and heat (hot showers, exercise, going outside in summer, or stress). After this illness, ANY of these things would cause me to flush for about 10 minutes, and often get dizzy as the blood rushed from my brain to my capillaries (OH), and itch. But it would stop just this side of hives. I couldn’t work out, take hot showers, or even go out in the summer heat to garden.

This whole 2010 illness began with extreme obstipation and pain in the lower right quadrant, which was interesting because my right ovary and tube had been removed in my 20s and my appendix had ruptured about ten years ago and also been removed; i.e., there should have been nothing there causing pain.

Between the 2010 episode and August 2012, I had two worsenings, that started out with the abdominal pain. I slowly crawl out of them after many weeks, but only to the level of general crumminess, never to wellness. I had two episodes of syncope; one that I called 911 about as I almost passed out. (Low BP?) The days were awful, I never slept through the night, my brain was fuzzy and my life was crap.

After several false starts, I finally made it to a good medical team: GI, hema/onco, and allergist/immun, who started looking at mastocytosis as a possible dx. Skin tests shows dust mite and mold (alternaria) allergies. Biopsies of skin, upper and lower GI, and bone (ouch!) all negative for mast cell activity. Allergist tried various meds, and we ended up with:

AM: Allegra 180
PM: Pepcid 20 mg, Xyzal 5 mg

And I could mostly sleep through the night anyway. But the heat still bothered me. My allergist/immunologist has diagnosed me with “Flushing syndrome” and possible: Chronic Cholinergic Urticaria and possible MCAS. I was still tired and fuzzy headed, and I gained almost 20 pounds over those two year without changing my eating habits.

In July 2012, the abdominal pain, obstipation and worse crumminess started again, and I was so fatigued I couldn't make it through a day without lying down to rest. My OB/GYN found a cyst in the lower right quad. with U/S. Following hysterectomy surgery last August, we now know that the abdominal pain and obstipation was due to recurring partial intestinal obstruction, and this was due to severe adhesions. Uterus, tubes, ovary, bladder were all stuck together, and it took the doc an hour to free everything from the adhesions. At least one of the adhesions was vascularized (and feeding crap into my system?), and there was the "cyst" within the adhesions (feeding crap into my system?). Incidental findings were fibroids in the uterus and the left, remaining ovary was twice the size it should have been in a post-menopausal woman. I also found out I was intolerant to salicylates, after blowing up with angioedema after taking the Motrin 800 they'd given me to take home following the surgery. This seems to be dose specific, as lower levels never did this too me.

So, I came out of the surgery... and I was well again! I slept through the night for the first time in years, and heat no longer seemed to trigger me. I bought a hot tub! My energy was back, and I felt like I used to, ten years ago! Over three months, the 20 pounds just sort of melted off. And I figured that I had a “surgical solution,” that we'd finally found either what "system" was causing the MCAD: the uterus, ovary, "cyst," or the vascularized adhesion. I didn't care, I was well! I remained on my three-med regime (although I slacked off on the AM Allegra a bit) and I felt great for about three months.

But now, my sx. are creeping back, and the nighttime flushing episodes are once again ruining my sleep. I saw my allergist last week. He’s good, and knows Dr. Akins. But he's not too interested in trying to figure a firm dx., because he said he'd be “treating me the same way, anyway.” Well, I’d like to know. After watching the Nancy Gould video on the importance of a good dx confirms that. So I'm back on the hunt for information/ ideas/solutions, and welcome any. Or should I just accept that I won’t know what’s causing this and work at finding a treatment that works?

Other weird, possibly related signs and labs:

Always have had low BP: 100/60
Urine tests negative for: pheochromcytoma and carcinoid syndrome
low IgG (670); low IgM (46) (12/30/10)
CH50 = 60 HIGH

Any comments/suggestions welcomed!

Best,
Gala

P.S. Update since I started writing this:

1.) I started self medicating with an additional Allegra at bedtime, and have slept through for three nights!

2.) Saw my GI doc, who asked the pathologist to go back and test the surgically removed items for mast cells. They were still on hand. Waiting on that.

Hi Lisa,

Thanks much for this. I'll PM you for the articles.

I am in northern California, and my allergist/immunologist is Travis Miller. He told me he'd studied with Dr. Akins, and seems up on MCAS. Problem is, his practice is very busy. Last visit I waited an hour and ten minutes past my appt. time, and seven minutes into our appt., he was walking out the door as I was literally still asking questions!

He did order a "vitamin D 25 OH (hydroxy)" test, and another tryptase test. But he didn't say whether or not I had to be off antihistamines to do the tryptase and I've done that before for other tests and it's grueling, so I haven't called him to clarify. (Avoidance behavior.) He also put me on 2000 IU vit. D3 daily. But kept the other meds the same, despite my sx. coming back. I'll have to go back through my lans from 2010 to see if those other tests were run. I know I did have a paraneoplastic panel run then that was fine, to r/o the MC sx. as secondary to cancers.

He did mention that the uterus can go wiggy and has a lot of mast cells, and thought I might have had endometriosis, although I never had a dx. or sx. so not sure why he would say that.

But all in all, he seems to just want to treat, rather than get to the bottom of what's the root cause. Perhaps that's ok, but it annoys the analytical side of my brain.

Thanks again!

Best,
Gala

(cont from above)
done one heck of a good job to be on the med regime you already are on. I would look to tweak it and see it you can make the quality of your life better.  Whatever you decide to do, we are here for you and glad you found us!!
Welcome again
Ramona

Hi Gala,

Sorry you've been having problems again!

A diagnosis is important, and more than that, having a mast cell doctor to stay in touch with and to help you with meds and symptoms can be the difference between feeling crummy and feeling good most of the time.

I saw Dr. Akin when he was in Ann Arbor, and when we moved to Colorado, he referred me to Dr. Jason Gotlib at Stanford in Palo Alto, CA.  Dr. Gotlib is a hematologist, but he's diagnosing and treating patients with suspected MCAS now.  Dr. Gotlib's contact info is in the Doctors section of this forum.  He asked that patients call the Hematology department at the Stanford Cancer Center to make an appointment.  He's very knowledgeable and will take the time to answer all your questions.

There's also a doctor in Denver at National Jewish Hospital who works with MCAS patients.  His name is Dr. Richard Weber.

I don't know which doctor has a shorter waiting time for an appointment.