More medical updata

[drwex]

We cut because we care. Nothing icky under the tag, just not cluttering up pages with details.


Had a chat with the recommended allergist this AM. Despite my fears he had indeed reviewed the case file. He said "interesting" a lot, which seems to be doctor-code for "I have no idea what's going on here." Barto apparently produced a very thorough three-page-single-spaced write-up of her work with me. This contrasts well with the half-page summary letter she sent me.

Reister admitted that Barto had covered all the bases he could think of. He'd really like to get a serum tryptase during an episode but since I'm not going to provoke one and since I'm avoiding the probable triggers that may not happen. He admitted that "idiopathic anaphylaxis" is a bad diagnosis to put down but he says he really has no idea what happened to me.

He's also sort of unhappy that my previous serum tryptase came back high-end-of-normal; he says the symptoms I'm showing are all consistent with mastocytosis except for the tryptase level. On whatever scale they use he'd expect a mastocytosis case to be around 20 and I'm at 8.5, which is more consistent with someone who has systemic environmental allergies. The only way to be 100% sure at this point would be a bone marrow biopsy, which is PAINFUL and not something we'll be doing, thankyouverymuch.

We discussed the situation around a severe challenge to the immune system can bring on all kinds of weird reactions and it's fully possible that's what happened and that it'll just get better on its own. He totally disbelieves my hypothesis for the 2001-02 episodes, claiming that people don't have allergic reactions to bacteria.

The next step is to do a 'specific challenge' step. This is somewhat problematic as it turns out that tomato allergy totally bypasses the normal igE mechanisms (chocolate allergy does, too - nobody knows why). Basically, no test in the current repertoire will show up a tomato allergy. He was unfamiliar with eggplant (like, I had to describe the vegetable to him!). The plan is to attempt a direct scratch test with these - apparently they do this on a semi-regular basis. We'll bring in a bit of tomato and a bit of eggplant, extract some juice and apply directly to scratches, then measure the result. This should be entertaining.

Depending on what is found from this, he may have me referred downtown to Beth Israel; apparently there's someone on staff there who's a national expert on mast cells and the things that involve them.

Comments

[ciani.livejournal.com]

I think I'll be thoroughly freaked out if you have mastocytosis. Another friend in Boston was recently diagnosed with it and she has it pretty bad.

[sweetmmeblue.livejournal.com]

Personally I'd be freaked out if he had it no matter who else has had it. I just hope it is allergies and not something more exotic.

[ciani.livejournal.com]

well yes, that too. I also hope it's allergies.

[drwex]

I sort of don't. If it's allergies then it means I developed a violent life-threatening allergy pretty much out of the blue. I'd rather not spend the rest of my life worried about what other things I'm suddenly going to discover I've turned allergic to.

[ciani.livejournal.com]

well from what my friend says with the mastocytosis just about anything can cause her to have a reaction.

[chienne-folle.livejournal.com]

I'm sorry to hear that you're "interesting;" that's not what anybody wants to hear come out of their physician's mouth!

I had to have a bone graft after breaking my leg very thoroughly in a car accident, and the donor site for the bone hurt like mad -- you really do want to avoid digging into your bones if at all possible.

[coraline]

claiming that people don't have allergic reactions to bacteria.

he's wrong. (doesn't say that that's what's happening in your case, but as a flat statement it's incorrect.)

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(i can't tell which ones i might only have access to due to my MIT IP address, so if you can't see those URLs and want info, i can send it to you...)

[drwex]

Thank you. All the links show up. Two are apparently from the 1920s!

Interesting abstracts nonetheless.

[chienne-folle.livejournal.com]

I think it's amazing and wonderful that medical journals have been scanned into the web from as far back as the 1920's!

[keyne.livejournal.com]

Oh, those are fascinating, and at least two are relevant to me and mine. Thank you.

[coraline]

good! i like doing this kind of research, so i'm glad other people find it useful :)

[rdhdsnippet.livejournal.com]

Really, I can't find much fault with a life that includes zero exposure to eggplant. :P

I hope you find something - not knowing is frusrtating.

[sweetmmeblue.livejournal.com]

I do. I LURV eggplant. I just have to find ways of eating it and not feeding it to him.

[hlmt.livejournal.com]

*snorfles at rdhdsnippet*

I did find that kind of odd, that he wouldn't know -of- eggplants even.

[taura-g.livejournal.com]

Oh gee, that's encouraging... not. Hm. Hopefully this is still just allergies and you are able to work it out exactly what it is...

And coming from someone who is not overly fond of eggplant, I'd still be a little suspicious of someone who had no idea what one was...Especially if he has lived in New England for any length of time.