Sunday, August 24, 2008

#@#@#$

So I am on what I am guessing is the largest email list that caters to people suffering from Mast Cell Disorders.

Depending on who you talk to, depending on what literature your read, there are a myriad of disorders, multiple diagnostic criteria, and multiple treatments.

The list for those who don't know (but then you probably aren't reading this)
* Systemic Mastocytosis (with or without cutaneous manifestations such as Urticaria Pigmentosa)
o Aggressive Mastocytosis
o Indolent Mastocytosis
o Mastocytosis with associated Hematologic Disorder
o Mast Cell Leukemia

* Cutaneous Mastocytosis
o Urticaria Pigmentosa (UP)
o Telengiecstasia Macularis Eruptive Perstans (TMEP)

* Mast Cell Activation Syndrome/ Disorder
* Idiopathic Anaphylaxis

(I'm leaving out the pediatric illnesses since children probably aren't reading my blog, and little of what I post here is relevant to the parents of children suffering from pediatric mast cell diseases)

So, we have all these categories and sub categories and suddenly it's become some sort of (and pardon my vulgarity here) dick waving competition to see who is suffering the most or whose diagnosis is the most valid. It's ridiculous. I personally got attacked by at least one member when I mentioned my status (ISM) and then mentioned I had not had a bone marrow biopsy. My doctor (Dr. Castells) is one of the leading researchers and physicians in the country for this disease, and she felt that a) all my blood, urine, and skin biopsies were proof positive and b) I was not physically stable enough to undergo a test that would not change my treatment protocol. In addition I went and got second and third opinions from 2 other mast cell disease specialists in the area, and also had Dr. Castell's mentor review my files. Every single one said the same thing, Indolent Systemic Mastocytosis, and every one agreed that the BMB seemed unnecessary at this time. (for the record I also got the ISM diagnosis from a dermatologist and the mast cell disease specialist from a different hospital before being referred to Dr. Castells)

All of this was not good enough for this woman, who seemed to imply I was malingering or that my diagnosis was not valid enough for her. What the fuck? Who is she (or anyone else) to judge what I've been told by leaders in their fields? Does my non BMB followed up diagnosis somehow dilute the mast cell suffering gene pool? Is our mailing list becoming some sort of fucked up eugenics in reverse?

Now there are people stating they are not welcome to support groups because they have a variant some people don't believe in, or having their diagnosis disregarded by other (potentially higher ranking) list members.

This all seems so absolutely goddamned stupid to me. It would be one thing is someone showed up on the mailing list saying, "man I have wicked hayfever, I can totally relate to what you guys are going through" or "man I stubbed my toe and chipped a nail, I totally know what it feels like to have osteoporosis at 30 to such an extent that when you stubbed your toe you broke it in half"

It's just so incredibly frustrating to see people denigrating each other's experiences with this disease because they do not match their own personal definition. We're all suffering and it's no one's job to try to corner the market on it (unless you have mast cell leukemia, in which case my heart goes out to you).

This could be a lot more eloquent and well thought out, but it just bugs me to see this perceived hierarchy of validation of suffering take place. It also bothers me to see this working to splinter what I find (or have found since lately it's been pissing me off) to be a very valuable resource in terms of dealing with this disease.

10 comments:

Kim said...

i understand you completely. i have ISM with TMEP (skin involvement), was just at a doctor today discussing the bone marrow biopsy...why get one? will it change the course of treatment...no....everyone agrees with diagnosis.....it's not necessary imo, just probably helps with research. don't let butt heads get you down :)

Mark said...

Well said Bridget. I totally agree with you, and you make the point very clearly. Back-biting and point scoring gets us nowhere. It's one of the main reasons I now keep my distance from the lists and groups. I've got enough crap to handle without listening to all the bickering. Life's too short. Shame, shame, shame on them!

Evelyn said...

I have to agree. At first I liked the listserv and I thought people were nice, but now I really don't feel welcome there because my whole situation is pending and such. Dr. Castells says MCAD but gave me a lot of lit. on SM because it seems that it might be, just waiting for my blood work to come back. If it comes back and I'm simply MCAD I don't feel welcome there, even though TMS says MCAD can have all the symptoms/severity as SM its just not good enough for some people and I can't handle how nasty everyone gets. Ridiculous.

Thanks so much for a great blog. There is life after a diagnosis!

Emily said...

Hi,

I just wanted to say hello. I'm 27 and I was just diagnosed with Urticaria Pigmentosa (although I have had the symptoms of it for more than ten years now.) I haven't had the blood tests yet to find out if its systemic or not, but am trying to get as much info as I can. My dermatologist who did the initial biopsy/diagnosis was not very helpful at all. It's remarkable for me to suddenly see pictures of other people with the same kind of splotches (I always thought I was just kind of a freak). I was thinking about joining a listserv but I think you've dissuaded me. I'm really just looking to find some people who might be able to answer my questions!

Bridget said...

Emily,

please don't let my complaining dissuade you from at least giving the list serve a try, you know?

I was in a cranky mood and have issue with a few people on the list and was venting here. My issues aside I have found the list to be an incredibly comforting forum at times (and admittedly frustrating at others)

also, feel free to ask me any questions you might have. while i might not be able to answer them directly, i can refer you to someone else who can.

Emily said...

Well I suppose I should try it, which list serv are you on? The only ones I found in my search were Yahoo health groups.

Bridget said...

i am on all the yahoo ones (i rarely read them) as this list:
http://www.lsoft.com/scripts/wl.exe?SL1=MASTO-MED&H=NIC.SURFNET.NL

has a ton of tms folk on it and seems pretty good when people aren't being drama whores.

marysharonr said...

Wow! Didn't look to see when you wrote it, but wow, and yes. Thank you. Exactly describes my recent experience. And if it matters, I found this post beautifully articulate.
Its so sad, I live in an area of the country where the health care certianly isn't the worst by any means, but they are not accostomed to dealing with the unusual. They have to "send me out" for specialist. The list serve has become an invaluable tool in finding good Doc's for those "send me out" occasions and great tips of stuff to try. So I need to be there, yet the incessant "dick waving" (OK that was brilliant - I can't think of a better term to describe it) makes me crazy. I already live with a rare chronic illness - I, like you, don't need that BS.

Anonymous said...

i have been sick with this shit for 12 years. i have not met another masto patient yet that has the same exact symptoms that i have. however i have met several mast nut cases. so many people with masto have no life at all outside of having this disease. don't let all that criteria bull crap get to ya. even the best docs disagree on what the criterias should be. i don't care what form of masto you have it all sucks. the important thing to remember is that there is a great big world out there that has no clue what we live with from day to day. we should all try to support each other. it doesnt matter if you had a stupid bmb. i would like to smack the person who said that to you up side the head. when you live with an illness as difficult as mastocytosis it is so important to have friends that can relate to what you are going through. by the way i have had 17. most of them were for research purposes. i dont want to say that i didnt benifit from knowing the results but the docs get alot more from it than we do and sometimes they tend to get a little carried away with stuff like that. i know that the clinical trials help them learn more ways to help us but when you are the one being experimented on it sucks. by the way the biopsies are very painful. i dont recomend it, ha, ha. anyway my point is that we have enough to deal with we dont neeed some stupid masto- patient-wanna-be-doctor being critical of us.

Anonymous said...

Who cares about the diagnosis? It might just mess you up when trying to get health insurance or life insurance later. I went into shock 10 times in 6 months until they put me on all the masto meds. I did get a bone marrow test done with results saying your mast cells were not shaped odd but there were more of them than normal. The bone marrow test was not fun and it did not give me any helpful information. So, I have not been "officially" diagnosed. I am just happy that a few over the counter meds do the trick. I am also happy I don't cook because opening a hot oven really sets me off.