The Mind Meltdown

I found this via Wikipedia entry for mastocytosis.

To me, this is the most devastating, foul, annoying, and soul destroying symptom of masto that I suffer from. And I suffer from it greatly. Having been a professional analyst with a very high IQ (no brag, just fact... never did me that much good!), and now being unable to spell some of the simpliest words or barely write a coherent sentence, it just kills me.

The one month I had on Gastrocrom, I experienced a great alleviation of this symptom. What right do they have to charge $680 for one months dosage of this medication!!!!?????

I asked my pharmacist, and he told me that you can buy a pound of cromolyn sodium for about $150!!! The raw powder. He recommends I check with a formulating pharmacy to see if I can get it encapsulated locally, as it used to be available.

UPDATE: I've found out in my recent research that 200 milligrams of Gastrocrom four times daily is NOT comparable to the 5 milligrams of cromolyn sodium in Nasalcrom. I had misunderstood the 5 millimeters of the oral solution in the vials for milligrams. Still, Nasalcrom does seem to help the rhinitis, so I will continue to use it. I guess that explains why it doesn't help the stomach and cognitive problems so much.

1: Psychosom Med. 1986 Jul-Aug;48(6):437-47.
Related Articles, Links
Mixed organic brain syndrome as a manifestation of systemic mastocytosis.
Rogers MP, Bloomingdale K, Murawski BJ, Soter NA, Reich P, Austen KF.

Systemic mastocytosis is a disease characterized by an excessive accumulation of mast cells, and associated with skin lesions, flushing, diarrhea, tachycardia, and psychiatric manifestations. In order to define more clearly the psychiatric manifestations, ten patients with this disorder underwent unstructured psychiatric interviews and a battery of psychologic testing. Both revealed a pattern of cognitive and affective changes in the majority of these patients, best categorized as an atypical or mixed organic brain syndrome. The cognitive changes consisted of diminished attention and memory, and the affective changes of anger, irritability, and, to a lesser extent, depression. These manifestations fluctuated with the level of disease activity, and appeared in some cases to respond to histamine antagonists and disodium cromoglycate, medications used to control the excessive mast cell activity. It is important for psychiatrists to be aware that mental status changes can represent psychiatric manifestations of mastocytosis, a readily treatable medical disorder.PMID: 3749421 [PubMed - indexed for MEDLINE]

All Advisors Appreciated

I've done nothing to promote this blog, really, as it's just been a place to put my "stuff" and feelings, so I was surprised to recently find out that someone had noticed it. I've been exchanging emails with another masto victim, which seems like the proper word, rather than patient. Some of the following is taken from some of that correspondence, but I thought I'd put out a call for anyone who can contribute general information or information about resources to please contact me.

I live alone, so no one really sees me when I'm sickest as I'm home alone in bed. It took awhile for my family to come to understand that I was actually sick. Now they do, but I hate to talk to them much about it as I don't want them to have a perception that talking to me means talking about sickness. Who wants to do that? I wouldn't and I don't want them to come to avoid me. Hence, this blog, to help me get things off my chest without bothering anyone. It, and a kind of political blog I also do, plus writing in general (and rewriting, as all of it now comes out a mess and I have to mold it into something readable with real and proper words... for example, I will often type the preceding more like "mole it into someone readable with reel and proofer works", no kidding, I don't know why), are my efforts to keep my brain functioning, too. I used to read the classics, now I have to reread paragraphs in magazines repeatedly.

I'm sure now that I'm in another bad phase as I doled out one of my last few Wellbutrin and two Ritalin's plus as much caffeine as I could stand yesterday to try to get some things done around the house. I achieved about 1/4 of what I used to be able to do working normally with little urgency and I was going as all out as much as I possibly could. I still ended up having to lay down twice. From 10am to 10pm, I managed to take a shower, gather some various spread out messes into sorted piles of messes, wash and dry one load of clothes, strip the bed, wash and dry the linens, remake the bed, throw out a bunch of trash, including most, not all, of moldy messes in the fridge. That was it. It's hard not to be disappointed in myself, but I know I did all I could manage. Much better than most days.

For that, today I spent mostly in bed, racked by the fatigue, myalgia, diarrhea, stomach cramps and quesiness, and my rashes have gone into overdrive, even though I've been taking hydroxyzine, an H1 blocker and Prevacid.

It's my third day since I've run out of ranitidine, my H2 blocker. I have to take 300 mg a day, plus Prevacid when I can get it or Prilosec OTC. I stay broke trying to live on disability, but I'll have to scramble around and try to get some more ranitidine tomorrow. It's pretty cheap OTC so that tells you how broke I am. Still, my system has gone haywire without it.

When I say haywire, what I mean is that I pretty much feel like I have to burp or poot all of the time. Constantly. Only, if I poot I'm just as likely to poop badly so I'm always running to the potty. And, if I burp, I'm just as likely to barf. Yet, I have no heartburn or indigestion. Probably because I have no desire to eat anything. If I try, I just manage to choke down a little. This is new, this time. No appetite. None. No hunger, either. Totally new for me.

My mental capacity has diminished so terribly, I can't imagine working or studying anything, even without the physical symptoms. The few weeks I had on Gastrocrom alleviated the brain fog greatly, but without it, and not to use the word in a derogatory way but rather descriptive, I get more and more retarded every day. So far, I've only had about two months, April and November, when I have felt somewhat better, except for the last 10 days or so I was taking the Gastrocrom. It was like a miracle, clearing up my rashes to a large degree, clearing the brain fog, and really helping the gastrointestinal. It even helped the fatigue some little bit, though I noted nothing different with the myalgia.

I've only had two Singulairs in the last two weeks. I have two left. I save them for severe attacks.

Any advice anyone can give me would be greatly appreciated, about meds or anything, especially about anyone's experience with the PPA program or what help the Mastocytosis Society might have been to them. I would be especially interested in hearing other peoples stories, and how you were diagnosed, and whether you think my doctor's clinical diagnosis will hold up or not as I will have to pursue social security disability. My disability insurance company has provided me with attorneys but I haven't been able to get the paperwork done yet. I have to do that paperwork and the paperwork for PPA, but it's hard to do complicated paperwork when first you have to peel yourself up off the floor.

Any tips you might have as to how I can deal with the health insurance company who has denied my medical coverage extension by claiming that there is no evidence I cannot work as a business analyst, despite my doctor's assurances, would also be helpful. I can appeal their determination to deny extension of my medical coverage.

I was only diagnosed a month before my insurance expired and I was terminated, and only then due to my own research. My doctors were stumped and just kept giving me round after round (6 or 7) of prednisone and then not understanding when I would just come out even sicker.

Needless to say, I haven't had a bone marrow test nor have any of the doctors I've seen had any idea how to test me, nor know who could, nor could I afford it if they did. I have to admit some anger at the doctors who were treating me originally as I don't think this would have developed if they had responded to my numerous complaints about the reactions I was obviously having to the Levaquin and the anti-biotic ointments, instead of telling me it was normal. According to my research and the doctors, adult onset of mastocytosis is triggered by an allergic reaction. An internist and an allergist have both clinically diagnosed me with systemic mastocytosis, probably centralized in my gastrointestinal system. Tellingly, the broad spectrum anti-biotic Levaquin I was on for my injury and which the pulmonologist determined I was having an allergic reaction to, was originally developed to treat gastrointestinal infections.

I would like to open up this blog to posts by other masto victims, if anyone would like to make contributions. You can post a little or a lot, once or as many times as you might like. Just email me and let me know and I can set you up to post as you'd like.

Otherwise, any medical, experiential, or even legal advice or expertise you may have for me would be greatly appreciated.

Still no word

No word on the insurance. I'm getting paperwork from lawyers the disability company has contracted with to try to get me on Social Security.

I've just been begging samples from my doctors office. I've been sick continuously now since around mid-May. I had a brief spell of feeling fairly okay April to mid-May.

Being without the Gastrocrom is the worst, since I had a few weeks of feeling better while on the medicine. Not great, but better.

I just have to do the best I can and try to hope.