Tuesday, February 12, 2008

My spots

Since I've been bitching about that article and the absolutely ridiculous statement that urticaria pigmentosa may turn into cancer, I figured I may as well write about my own a little urticaria pigmentosas.

Today I went to see my doctor, and they had an intern in, as well as a fellow. They were both very excited to see an ISM patient, as even though my doctor sees a lot, we all have different stories, different reactions, different presentations. So we went over my medical history and I stressed to both of them how painful and grueling the whole process of getting diagnosed was, and what a fluke it was for the doctor who picked it up. I stressed that patients who suddenly come down with massive anxiety disorders with no exogenous stimulus should be looked at more closely.

I never wrote about what happened to me the week in which I was diagnosed because it is incredibly painful to relive, but it included being told I had a severe anxiety disorder, temporal lobe epilepsy, a noro-virus coupled with anxiety disorder and temporal lobe epilepsy, some other form of epilepsy, ms, potential hypochondria before finally it was decided I needed to be locked in a psych evaluation room for 12 hours under sedation because they could not keep my tachycardia under control and were convinced it was anxiety even though I was vomiting blood (which would later be attributed to the stomach damage I incurred from all the histamines that were flooding my body). There's a lot more to it, but I really don't want to get into details. It was horrible, honestly one of the worst experiences of my life. I am sure that many of you reading this who have mastocytosis can relate. The baffled doctors, the unclear medical tests, being told it is psychological when blood test after blood test comes out skewed. It's a story that many of us can tell sadly.

A few days later I noticed really odd mottling across the skin of my stomach so I made an appointment to see a dermatologist. While examining the mottled skin on my stomach, he noted that I had a lot of freckles on my back and torso. I told him that yeah, they'd been popping up over the past few years, that prior to that my skin was relatively flawless, but I'd had one biopsied to make sure it wasn't cancer, and it wasn't, and that i wasn't thrilled with how they looked cosmetically but I really didn't care. He scratched one, waited a moment, and then told me about mastocytosis. The only reason he was so well versed in it is because he works shifts at Children's Hospital, and this disease is more common in children. He immediately drew a ton of blood, did a 24 hour urine histamine, referred me to my specialist, and the rest, as they say, is history.

But, I figure I may as well show you what I've been talking about. This is a photo of my back. None of the freckles are freckles. They are all clusters of mast cells that show up in a cutaneous manifestation. One of the ones on the right had been intentionally irritated so as to show Darier's sign. In other words, it released a ton of histamines into my system. However, since I'm on so many meds, my reaction is pretty localized. I won't lie, I feel like hell after they do it, but I'm glad to suffer it to teach another doctor about a disease so infrequently seen.

So this is it, the real visible physical manifestation that I am not well. It's honestly hard for me to post this, because while I know it's not a real deformity, and I'm currently getting off pretty easy compared to many people with mastocytosis or urticaria pigmentosa, it's hard for me to look at, or show off, because it looks so unlike me. A few years ago the skin on my body was spotless, and now i'm turning into a leopard. but i guess that's a pretty good animal for the first thing to pop into mind, so maybe i can pretend i have that strength as well.

(for the record, I adjusted the contrast on this a bit because the room was very bright at the photo came out a bit washed out. This is also a few minutes after the Darier's sign had been activated and was starting to calm down)


Kim said...

I can so relate... My doctor would like me to go to the Cleveland Clinic. The two doctors I currently see have no other masto patients (ever). I would like to extablish a relationship with some doctor with some experience. Any advise?

Bridget said...

Hi Kim

Dr Cem Akin is supposed to be great (he's in michigan) and he's very involved in the TMS Board. Otherwise, I cannot sing the praises of my doctor (Marianna Castells at Brigham and Women's in Boston) enough

Kim said...

I considered going to Michigan. I hate the idea of being tested to death. I guess the topper with one of my doctors, is he didn't see any reason I couldn't serve U.S. District Court Jury Duty, 90 miles away, that was expected to last 4-6 months. My doctors don't have any clue how I feel...or how bad I feel at times. Sorry about yours "spots". I've gotten to the point where I am saying, "at least it isn't on my my face." Thanks for the info!

Bridget said...

no problem. Dr. Akin is one of the most respected doctors when it comes to mast cell disease, and he's closer to you than my doctor, so I'd say go for it if you can. The right treatment can make a world of difference. I'll be honest, I'm not 100% and I am in the process of filing for disability, but I'm hoping it is a short term thing, as I'd really prefer for things to not stay this way....However, since I have been getting treatment, I've been feeling a ton better. i still have bad days, but they are becoming less frequent and less severe.

are you on any treatments now for masto?

Kim said...

yes i am taking the protocol medications. gastrocrom, tagament, hydroxizine (sp? anitihis.), epipen, blah blah blah. haha i also take diflucan once a week, as it seems to help my rash. (not protocol) my rash being TMEP (the rare rash). i feel bad for you as i am 51. you are so young to be dealing with this. i always understand every single thing you are saying. i'll try to summarize my "extravaganza" as my son likes to call it. haha i believe i have had ISM for years. however in 2001 i developed the rash, which continued down my legs and continues spreading to this day. the dermo biopsied and they came up with the TMEP but "SM is so rare, you can't have that". well as i turned out i do, my last tryptase is 138. i have been on gastrocrom for a year and a half. i celebrate good days and just deal with bad days. i do not work. there is no way i could. for me i never went back to work, full time, after my children, so i would sub teach and take temporary teaching jobs. i just muddle thru, my husband and sons understand my illness, but i don't believe the rest of my family do. i try not to drone on about it to them, cause they don't understand. they worry more than anything. i have tried not to tell too many friends, because like you said..."the sick friend" thing. i really would like to be established with a masto doctor, mainly if i would get breast cancer,etc. or something in which i would need to know what to do, as my GP and the infectious disease doctor don't really have a clue about SM. with all that being said, i do think one of the main things, is foods....my husband and i drove to sanibel, florida for a couple weeks, at the end of our vacation, i got a call my dad had a massive stroke and was going to die. we loaded up and drove straight thru, he did die. i spent these last days doing funeral "stuff" and being completely heartbroken (we're are all so close)...but have come though it w/o too much of a "masto extravaganza" haha anyway, i think my attention to food consumption is key. didn't mean to ramble. i do feel for you and all others in the same boat.

Bridget said...

Kim this might interest you:

For your information....
I am told today that Dr. O'Lansky is now in practice in the Cleveland Clinic. She was in practice in Oklahoma. Spoke to the TMS Conference in Oklahoma and also was seen by several members of the Oklahoma Support Group.

Anonymous said...

Hi. Do you know of any doctors in the Midwest? I have a history of anaphylaxis, and it's coming back worse than ever...with no actual triggers. It's getting that I'm scared to live with my kids (including two under 4 years), since I never know when I might have to run to the ER. I'm divorced, and live alone with them. I'm sick of not knowing what's wrong with me! And I stumbled upon this mastocytosis condition today, and I don't need to tell you that I've always had a few freckles, but seems more and more as I get older.