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.

Medication

Two of the best medications for mastocytosis are on the Wal-mart $4 list. Doxepin and Hydroxyzine. Here is the link. I haven't been on Doxepin yet, but I plan to get an RX from the doctor if she will, because I've only just learned that it is a good medication for mastocytosis because of its inhibition action of H1 and H2 blockers. Hydroxyzine keeps me sane from suppressing the itching and the anxiety that it causes. I have to find out it Wal-mart has only the syrup or what. It's not clear on the list.

As for Wellbutrin, the best price I've found is here. The dopamine reuptake inhibition of Doxepin is minimal, so I will still need the Wellbutrin for that, probably. The doctor had wanted me to add Zoloft because it won't cause me to gain weight. Doxepin might. So I'm not sure what she'll say.

Since I also have ADHD, I take Ritalin, but an affordable alternative is dextroamphetimine (Dexedrine), so I'm hoping to maybe take that which should counteract the weight gain, maybe.

It's ridiculous having to do all this research myself, but my doctor is no expert on mastocytosis. Of course, all masto patients experience this since there are only a handful of experts spread around the world and even they are treading on unknown territory most of the time. OK, actually, I'm just procrastinating, which is easy to do when you feel like shit anyway.

I still have to do the paperwork for PPA. I think I just wanted to do some research first so I know if I'll be better off switching or staying with whatever I can get on the PPA program.

Singulair is my main concern. I have found no affordable sources nor any alternatives whatsoever. As you can see here, the patent is extended until 2012! Merck gets 20 years of patent protection on this medication. 20 years! However, I do think they participate in PPA, so I'll update on this.

Symptom List

As I've said before, November was a fairly good month, all in all. Mid-October, I was well into a long masto phase that had picked up in May. April had been fairly decent, but every month prior back to the date of the accident, the triggering event, had been hell.

Now, I'm obviously going into another phase. I don't really know what to expect. So, it seems like a good time to post my symptoms as they were as of October 12th, which I had prepared for my doctor in case she needed it for the clinical diagnosis. Apparently, she felt she had enough info. Now, if only the insurance company would agree that her clinical diagnosis, prognosis, and disability determination were enough.

I've got to bite the bullet and call the insurance company and ask just what it is that they think they need. I've got to make myself do that on Monday. I have no idea why they think they can second guess my doctor. They aren't challenging the diagnosis, just the disability from what I read in the letter. How can they think I could hold down a job is beyond me.

I digress and ramble. Here is the symptom list.

CONSTANT

1) Runny nose
2) Stuffy sinuses
3) Inability to concentrate, focus, failing memory
4) Extreme indigestion
5) Extreme excess gas (not to worry, controlled with meds!)
6) Coughing, ranging from mild to unable to talk normally
7) Itching (both rashes and other places)
8) Rashes
Inner wrists (small pale bumps)
Inner elbows (redness, or plaque-like patch)
Back of knees (red-brown patches)
Around clavicle (red bumps)
Sternum (red plaque-like patch)
Around navel (red bumps to plaque-like patch)
Abdomen, above ovaries (red to brown plaque-like patches)
Down sides of back (red bumps to plaque-like patch)
Center of lower back (large red brown patch and red bumps)
Both sides of neck (red bumps to plaque-like patch)
(Note: Vanos ointment, a very powerful corticosteroid ointment, will clear these symptoms, but can only be used on a small area at a time, so by attentive rotation, they can be kept under some control at varying times in varying degrees.)
9) Extremely susceptible to bug bites as never before, with mild to severe sickness for hours to days afterward
10) Daily “sick” headaches lasting for hours to all day
11) Extreme pain from bone spurs in injured foot and ankles
12) Urinary urgency (steadily increasing from normal in last few months) (Note: this may have been a side effect of Gastrocrom? Haven't noticed it continuing at this point.)
13) Substantial fatigue

VERY FREQUENTLY (4 TO 5 DAYS OUT OF 7)
13) Diarrhea
14) Painful stomach aches
15) Extreme fatigue
16) Mild flushing -
Feeling very hot or very cold without relation to temperature/activity
Feeling very hot with even mild activity or mild warmth

FREQUENTLY (3 TO 4 DAYS OUT OF 7)
17) Nausea
18) Painful body aches, bones and joints
19) Bouts of unreasonable irritability, flashes of temper

OCCASIONALLY (1 TO 3 TIMES A MONTH)
20) Sudden onset of vomiting with no warning and little nausea
21) Severe flushing, lasting for a few minutes to an hour or more, usually when mildly stressed (doctor offices, social gatherings, remembering accident, etc.)

Bizarro Allergies

When I am in a masto phase like I am now, it's downright stupifying what I'll have an allergy attack for. Just now, I was feeling fairly ok, and I went and brushed my teeth with the almost used up toothpaste I've been using for weeks now I guess. I immediately got completely congested and slammed with body aches and bone pain. Coughing now.

I've noticed a reaction to hairspray I've used for years, a drink of orange soda, almost anything, for gosh sakes. It's ridiculous.

This time, I'm having a hell of a time sleeping. The fatigue and constant itching is wearing on me. All I can do is try to keep myself occupied to keep my mind off of the itching, but by not doing anything physical because I not only have zero energy, but even minimal activity causes the chemical cascade to begin and my world falls apart.

I had no choice but to get outside the other day and mow the smallish front yard. I know, I know, it could have killed me, but it had to be done and I had no money to pay anyone. I was very careful and dressed fully covered, kept my medical mask on, drank tons of water, and pumped myself full of H1 and H2 blocker and Singulair and Prevacid. I had to take a break about every twenty feet, so it took me 4 hours. Thankfully, a neighbor came and took over, so I managed to survive. God, the pain afterwards was almost unbearable, but I still have a few Darvocets and I can afford to get them refilled. I wasn't able to sleep, both from the pain and the congestion and the labored breathing and coughing. It took about 48 hours to get back to awful.

The house is a holy mess now though, and that stresses me. Family matters is a stressor right now. No matter how I try to tell people that I cannot be exposed to stress, it doesn't seem to register. I understand that I don't look all that ill or disabled, except when I'm in respiratory distress, so it's easy to dismiss it or forget it. But, a good hard look will tell anyone that I'm not well, too. And, when I feel like this, I even slack on what little medicine I have left and so I just feel worse.

Oh, pshaw. It's not their fault.

I need a freakin' keeper.

Chills

Haven't been able to find any reference about the weirdness I described in my last post, but I did find the following. I have experienced this also, I can't even say how many times. It's funny how once something like this happens a few times, you start to not notice it when it does. Especially when you're functioning on about half brain capacity than previously. Hopefully, keeping this blog will help me keep a handle on things.

Question: Every time I have had an attack, I have terrible shaking, as if terribly chilled, although I may or may not feel chilled at the time. I totally cannot control it no matter how hard I try to stop shaking. What is the cause of this?
Moderator: And actually that question several people asked. We have combined it.
Dr. Theoharides: I don’t know the answer but I am confused by the question. Chills are one thing, shaking is another. Are we asking chills, meaning someone feeling cold or trembling because they feel cold? Or shaking because….
Moderator: They look like they are having chills but they are not, they actually are not feeling cold, they are just shaking. Is there anybody here that asked that question that could clarify it?
Audience member: I have that.
Audience member: I have that too.
Audience member: I have that.
Laughter in the group.
Moderator: Do you actually feel cold?
Audience member: What it is, is that if someone is actually looking at you, they would think that you are cold, but you are not really cold.
Audience member: Have you taken your blood pressure when this happens?
Audience member: Yes, and it drops.
Dr. Castells: We don’t really know what it is due to but that question is very important. If the blood pressure is going down, then there is poor perfusion to the muscles, in the legs, in the extremities, in some parts of the body so the body is actually trying to help that the blood vessels can continue to provide circulation to those muscles and that might induce some twitching of the muscles so the blood pressure and the release of histamines and the other mediators to the blood stream can actually induce those rigors.. Truly we don’t have any animal data to support which of the mediators or which one it would be. I have encountered the phenomenon in a lot of my patients with mast cell activation syndrome, where they start to shake but shortly after they recover from the profound attack of hypotension. And this is the only explanation, why the blood pressure is recovering. The muscles are trying to get the blood flow continued.
Dr. Butterfield: I just want to use this as an opportunity to suggest having a mediator kit for these times. Doing a sample, that is only way we find out. You have to do the basic stuff here. Basic information.

Arrhythmia and weirdness

Had a bout of heart arrhythmia today. I've been having the chest pains for several days, Thursday evening was the first time, this go-round.

The fatigue is still overwhelming. I cannot be awake longer than 4 to 5 hours without having to lay down and sleep for awhile. Yesterday, I took one of my last few precious Wellbutrin and Ritalin, plus drank a 1/4 liter of Pepsi and half of a venti Starbucks and only managed to stay up about 5 1/2 hours before I had to sleep for 4 hours. I have no real sleep cycle. I sleep when I have to because I cannot stay awake a minute longer. Today, I got up about 9:30am, couldn't stay awake, went back to sleep until 12:30pm, napped from 4pm to 6;30pm, up until 8:45pm and slept until 12:30am. That's after a whole venti Starbucks. It's bizarre.

As of yesterday, the myalgia and stomach upset had gotten considerably better. So, that's something.

One note, during the few weeks I'd had while feeling somewhat normal, I had another bizarre experience twice, both lasting only seconds, the first one longer than the second.

I cannot describe it other than by calling it internal chills. I was not cold. I was warm. I felt nothing on my skin or muscles. My body didn't move like it does when I shiver. I only shivered on the inside from about the center of my mid-thighs, through my internal organs, and up through what I imagine was my brain stem. The first episode lasted maybe 4 seconds, long enough for me to feel it, analyze the sensation and ask myself "what the hell is this?". The second time only maybe 1 1/2 second, just enough to feel it and acknowledge it.

Internal chillblaines? Weird.

Brain Fog

I either took another Relafen an hour ago, or I didn't. I remember thinking about it. I remember picking up the bottle. I don't remember whether I took one or not. I was sitting right here when then. I haven't done anything else in between.

This is how your brain fogs on mastocytosis.

Oh yeah. I could analyze complex computer programs and write specifications.

I've got to figure out what to do, somehow. Maybe I should see a lawyer and see if he can get me my medical benefits. How I could afford to pay him, I have no idea.

Myalgia

I felt simply horrible yesterday, but feeling a little better today except that the myalgia has set in badly.

I wish I could take an NSAID, but I dare not. The doctor gave me Relafen which I'll probably take in a bit to see if it helps. Doesn't usually. Not sure if its an NSAID or not. Got it before the diagnosis. I've taken Tylenol but this is some major pain.

I looked up Relafen, and it is an NSAID. I've taken it before though and didn't notice a problem. I never know what will happen.

But, I'm hurting badly so I may chance it. Stomach is still upset, but what the hell.

I need to call the mastocytosis society and see if they can help. Maybe Monday. Still have tons of paperwork to do, both for Social Security and PPA. Hopefully, I can get at least some meds at an affordable price through them.

The worst thing to go without, besides the Gastrocrom, is the Wellbutrin an now the doctor wants to add another....not Paxil, the other one, I can't remember right now.

I've been taking Wellbutrin for years but could go off for quite awhile before I really missed it. Not now.

Damn, this is such a drag.