Wednesday, November 12, 2008


This is unbelievable and I just want to vent for a second.

So I'm going through the whole disability process, and my lawyers wanted me to go through a 3rd party psychological evaluation re: the anxiety that has gotten bad as a result of the masto and all of that. While I don't necessarily feel like I have overwhelming the-sky-is-falling anxiety, the idea of going into shock scares the hell out of me to the point where I do avoid situations where it may happen (probably to a extreme extent at time), generally try to avoid going out alone, avoid hugging people wearing perfume, avoid eating out, stuff like that.

I'm guessing my lawyers are trying to cheap out here and say that I'm disabled due to anxiety (or have comorbid anxiety be a large portion of my case, which makes sense since most masto patients do have issues with depression or anxiety or the oft mentioned "organic brain disorder") since that would be far easier to get through the courts than saying I'm disabled due to a rare disease that most physicians don't fully understand (one could argue that about the specialists too I'd wager, since there seems to be a lack of agreement re: the consensus statement, diagnostic requirements, etc). I'm not 100% certain that is their strategy, or if they just wanted to confirm that I have anxiety issues that could at the current time play into my inability to work (I am also being seen by a psychiatrist and a psychologist for anxiety, especially since anxiety can trigger mast cell events...making a pretty negative cycle of events which I 100% agree lends to my being overcautious in many situations)

So, we all also know that it seems to take somewhere between 5-10 years (on average) for someone to get most orphan disease diagnoses, including Mastcoytosis, since it's not common and therefore not commonly looked for. I mean, almost 5 years ago I had one of my UP biopsied because I was concerned about Basal Cell Carcinoma (my father has it) and the skin sample came back full of histamines and the dermatologist I saw at that time said "Huh, that's not common. It's probably nothing to worry about though...If you find the spots unpleasant to look at, we could always remove them with laser surgery". It wasn't until a few years later when that doctor was replaced and her replacement was looking through my chart and saw the histamine levels in my skin, was astounded at her negligence and blatant ignorance of the fact that something aside from cosmetics was obviously wrong with my skin sample. He happened to work with Dr. Castells at Childen's Hospital, recognized that my biopsy reports and other symptoms I had had listed in the hospital database looked like masto and asked me to let him do a biopsy, some bloodwork and some urine work...which lead to my Masto diagnosis since my tryptase and urine histamine levels were off the charts.

Had the first dermatologist I saw back in Jan 04 actually followed up on the abnormal but in her eyes unimportant findings of an extremely high histamine load in my skin, I would've had my diagnosis -that- much sooner. My stomach would've been spared and I might've been able to start preventative treatment to ward off or lessen the osteoporosis I've got today. But she didn't, and so I walked around for a couple more years wondering what the fuck was wrong with me when a few giant puzzle pieces were right there...just overlooked. Yeah, I'm bitter.

So, I go see this psychiatrist for this review and he concludes that leading up to my Mastocytosis diagnosis I had a Somatoform* disorder and then I just happened to get a diagnosis for a systemic illness that just happened to explain every single symptom that I was complaining about in the years leading up to my diagnosis.

Prior to my diagnosis I was complaining of bone/joint pain, brain lesions, GI disturbances, chronic elevated WBC and RBC, fatigue, and chronic rhinosinusitis. EVERY doctor that I have had, upon finding out that I was diagnosed with Mastocytosis universally said, "Oh well now everything makes sense!" However in the eyes of this psychiatrist, I was apparently physically healthy (while psychologically unhealthy) until I got diagnosed with masto, however I was just convinced I had all the above symptoms. I then just happened to get diagnosed with a disease that literally explained -every-single-one.

This just seems ridiculous. I have no doubt that I am at times over anxious or over cautious about triggers and going into shock. I have no doubt that I am over
anxious about getting sicker. HOWEVER, I do not see how it is logistically possible for me to have a Somatoform disorder (which means that there are -0- clinical findings) prior to my diagnosis. That would seem to imply that I wasn't sick until the day that I was diagnosed. And I can assure you all that for certain things (like say, my diverticulitis, brain lesions, gastritis, WBC and RBC counts) I did
have clinical findings since it would be impossible for me to make that stuff up. I mean, who convinces themselves that they have asymptomatic brain lesions? What 28 year old would think to convince themselves they had diverticulitis? I mean, I admit that before I got my diagnosis I had tons of useless appointments with various doctors trying to figure out what was wrong with me, but the consensus always was that -something- was wrong due to my abnormal labs and x-rays, the question was always, "What?" or "Why can't we figure it out?"

I just find this incredibly disheartening. It feels like in this guys eyes, the last year and a half of treatment mean nothing, or that it was impossible for me to have had masto prior to my diagnosis or something. Seriously, it's just illogical. Of course a patient with a rare disease that can take years to diagnosis is going to end up being shuffled off to many specialists, might look at stupid shit online like mercury poisoning or candida syndrome or whatever wacky homeopathic or naturopathic cures are out there since they inevitably offer some sort of panacea towards those who feel ill with no definable root cause...but when one of those patients ends up diagnosed with a legitimate disease -after- a few years of that nonsense, the idea that the behavior prior to the diagnosis would indicate a somatoform disorder just doesn't make sense.

Just read "How Doctors Think" to get an idea of the hostility that the medical profession holds both towards women and the chronically ill to get an idea of what a negative eye is being pointed in our direction...So yeah, for this doctor to make a diagnosis like that just really defies logic.

* for those too busy to look it up, a Somatoform disorder is a psychological disease in which the patient exhibits physical symptoms with absolutely no clinical findings to back them up. It doesn't discount the physical pain that a patient may be going through, however the cause is solely psychological and not physical, therefore requiring therapy as opposed to medication. I can assure you that no amount of SSRIs or therapy helped me with my symptoms, however Gastrocrom and Ketotifen certainly did, and helped me at a point where I assumed -no- medication would help me.


Tanya said...

Hi Bridget
I've just stumbled upon your blog. I am not officially diagnosed yet. I'm not sure if I'll ever get an official diagnosis, but anyways, I am dealing with the whole anaphylactic shock business on a fairly regular basis. YOU ARE NOT IN THE LEAST BIT CRAZY to be concerned about having anaphylactic attacks and to do your best to avoid any possibility of triggering them!!!!!!!! Holy cow, anyone who experiences these attacks would have to be crazy if they WEREN'T concerned and DIDN'T try to avoid them! I have a small amount of control in my own situation in that I know my shocks always occur after eating. I have no food allergies at all. I could eat the same meal the next day without any problem, but somehow the act of eating is what sets me off. So if I'm going somewhere and don't want to have an attack, I just don't eat. That's the only way I can control things. But for you and others who have several triggers and have no way of controlling other people who might set you off.....I can only imagine that leaving the house means a lot of thinking and planning ahead. It's only logical and I hate it when people are too stupid to even understand logic.

marysharonr said...

I had a Doc tell me earlier this year that I didn't really have mastocytosis, that what I had was a deviated septum and that if I'd have surgery on that all my problems would go away. That is pretty impressive that they could stop me from shocking by fixing my deviated septum huh? Or cure my IC? Or get rid of my hives? All from a deviated septum.
Best part of the story is that his letter went in the medical file that ultimately went to social security disability - some time later I was asked why I refused to have my deviated septum repaired. I have 4 positive bone marrow biopsis for systemic mastocytosis and people are worried about a place in my nose that was broken 4 years before I became ill.
I just got a real masto specialist to write a letter this week about the fact that the deviated septum has nothing to do with my symptoms.
I may go crazy trying to deal with the disability people. I am so sorry you are having such a difficult time. Love your blog.

Anonymous said...

Please don't label yourself "over-anxious." Avoiding triggers is SMART!

Anonymous said...

please ask your doctor to write a letter to the disability board as well as to the doctor conducting the psychological evaluation on your behalf. when i went through this process my doctors letters seemed to help the psych understand better.also tell your lawer that you are not opposed to going before a judge to explain to him how sm has disabled you. i went before the judge and he told me that even though i looked healthy he could understand that was disabled. dont let this discourage you it is a standard procedure for all people trying to get disability. hang in there girl. find comfort in the fact that your blog helps so many of us who are in the same boat as you. thanks!

Disability Attorney said...

Hi Bridget,

Your attorneys are just trying to give you the best possible chance to have your disability claim approved.

I have dealt with the Social Security Administration (SSA) plenty of times.

The most important thing they consider when looking at your disability claim is the documented diagnosis of a physician or therapist.