The Dino-Aspie Ex-Café (for Those 40+... or feeling creaky)

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I think I'd better go to bed. I'm so tired my eyes are burning and the computer screen is fuzzy! Apparently I am the pumpkin! G'night all!

"Nunquam nutritor...." (Quatermass's sig)

"Don't go looking for trouble; if it wants to find you, it will."

Close?

no idea whether i'm dyslexic or not, but type a lot of letters wrong, especially two consonants in the end of a word. In the beginning I thought that it was because I couldn't type very well, but now I do type very fast and still have it. I'm so used to it that I correct it just as fast as the writing itself. At least every 7 letters I miss one and go back just as quick.
maybe I should write an un-corrected text to see what it gives.
so this is a peice of an ucnorrected szntence, as you see there are typeingmistakes becauyse i hit the wrong butteon but also switshed lettedrs, added letters prabobly cause i hit tow buttons at the sametime and i do forget to use space every 20 words, hm interesting
Also when reading I find myself starting a word with the letter or sound of the next word.

It very loosely means "Don't feed the trolls, or I'll feed you to them."

Peeping from the computer screen.... I'm supposed to be working.... Gulp! Hello anyway!

CAUGHT YA!

ya know you are a closet Aspie when you can work and still still sneak a peek into a different world!

Merle

Hello, there, Weirdobird! Care for a muffin? Coffee? Tea? Please tell us a little about yourself.

HELLO SAILOR!! !!

Yeah, especially because they can't tell us what's going on. Dunno if I posted this before or not. If so, my apologies. She can just thwap me for posting her stuff later if she wants. I'm still hoping someone might have seen something like this and point us in at least a remotely hopeful direction to find out what the hell it is:

At first they thought Fabry's, because of some of the other stuff. That was not a fun period of time - this was back before they had the treatment for it. They managed to scare the hell out of us with that one. I think that's the first time I'd been in hysterics for years. Shipped samples off to Mt. Sinai, they did. But the DNA and the blood tests on us both say that while our levels of the enzyme are low, they are definitely there. No reason to do further testing for Fabry's, they said.

We've been to at least two of each variety of medic. Three of some of 'em. Nada. After the Fabry scare they shipped the pair of us off to rheumatologists, endocrinologists, neurologists, the mitochondrial disease research center, allergists, an infectious disease guy, cardiologists, dermatologists, a shrink, and folks I can't remember any more. That poor kid's been poked, thumped, irradiated, scanned, asked to treadmill, wired, zapped, heated, dieted, exercised, and monitored. They have to have taken at least two quarts of her blood by now. Both I and her geneticist have spent hours and hours over the last several years poring through PubMed and the other medical databases looking for any report of people with similar issues.

A lot of her issues are relatively minor. If it were that she just had one, or two, or even three of them together I'd just ignore it all. But she's got a bunch of little stuff, and some more serious things, going on. My gut feeling is that they're connected, somehow. Little parts of a larger picture that I just don't see. Maybe I'm getting neurotic (or moreso) in my old age. But this nags at me.

We went through all the possible "usual" diseases/syndromes/conditions' possible diagnoses over the years: lupus, etc., but the docs say no on them. The kid has a raft of strange symptoms and things that happen with no obvious cause. Very high (103F + )fevers out of the blue. Can't tolerate bright light or loud sounds (but I can't either, I think it's Aspie there). Had a long stretch where she had trouble regulating her blood pressure. She took dance class every year for years at school, but would turn grey and have to sit down after dancing for any length of time, became disoriented. Her teacher pointed that one out. She couldn't get her legs to do what she wanted them to do until she rested - almost fell over during a dance recital, looked horrible. Her autonomic nervous system doesn't seem to be working properly. She can bike for miles and miles on a stationary bike (under A/C), but can't walk more than five minutes on a treadmill at a reasonable pace before she gets lightheaded. She is hypersensitive to pain. Dermatographism. Raynaud's. Benign Hypermobile Joint Syndrome. There's one report in her records of her her bones being not as dense as they should be, a long time ago. Lots of sinus and ear infections. Can't sweat so she has to watch the ambient temperature or risk heatstroke. Joint and muscle pains that start for no reason, or if she injures/overuses one the pain and swelling will bounce around her body to other joints at random. She's so tired so much of the time! If either of us spend much time outdoors in the sun we feel like hell for days. She developed diabetes (which has since resolved?), had the seizure (with auras).... I keep waiting for the other cosmic shoe to drop.

Her bloodwork, other than the ANA, is almost textbook perfect. Even all the exotic tests show nothing. Keeping a log showed no obvious patterns of anything. (Except the going out and being in the sun thing. And we're not sure if it was the sun, allergies from outside plants, or the stress of being in large crowds of people at those events. We're leaning towards it not being the stress.) Her hair and teeth are beautiful, no defects. Her skin is gorgeous, except that it's always been extremely dry (she's never been able to sweat). No obvious food allergies (other than aspertame and the seaweed they give you at sushi places). Nothing wrong with her appetite. There's nothing wrong with her mental abilities. She is basically a stable individual, given all. The only thing that seems even a little out of the ordinary, appearance wise, is that she's shorter than I expected her to be by 5 or 6 inches. Huge wonking (size 10 to 11) feet, same as mine, but she's only 5'4". But her father's people are short, so that's not all that bizarre. Except for the feet.

The geneticist found some researchers who are interested in meeting her and trying to sort it out, but she's so tired of it all that she's balking. All she has to do is take her blood pressure every day, at three intervals, and write it down. She doesn't do so, and hasn't for two months. I'm about to have to thank the geneticist for all her hard work and tell her that the kid doesn't want to go there. She says she wants to, but she doesn't follow though so she can't want to very badly. So that whole thing is stalled. It's her life now, after all. No longer my decision to make. It just irritates me that she's leaving other people who have offered to help her hanging in the breeze without even an apology or any resolution.

I guess we're just going to wait for the shoe thud.

Last edited by Nan on 12 Oct 2007, 11:42 am, edited 4 times in total.

Oh, I wish I still had my job in the hospital library. I was a researcher for the doctors, read all the journals, microfiched files (yeah, it was while ago ), had just started searching the net when my job was made obsolete by, you guessed it, the computer and internet . Any moron could look up what they wanted, they didn't have to memorize anything or know anything about medicine.
Anyhoo, I'd be on that mystery in a minute. I get a little obsessed!

I can see why she doesn't want to be looked at, poked or prodded anymore. I have to be seriously ill before I let anyone poke or prod me. Those physicals I always tell people to have, I haven't had one in 7 years. I have made the appointments but when the time comes I just can't stand the thought of being touched and inspected. I've spent a combined total of 18 months of my life in the hospital because of the Crohn's so I really get where the kid's head is at.

Yeah, I know. I can't blame her, really. I hate to go near the place myself. I usually end up telling them what the problem is, and, given the latest fiasco with medications, am going to end up telling them what to prescribe for me as well. So why am ~I~ paying ~them~???

But to finally get out of the "HMO" track to maybe a place where people who could be considered highly competent at ferreting out the unusual stuff were located, to get it all done in one multi-day visit with the folks doing the cutting edge research on the unusual instead of the "your 15 minutes are up becausehere comes mrs. feemster and her rheumatism again and i have to see the next patient in 15 minutes after her" types....

Sigh.

While she has insurance, too. They will toss her off my insurance in just about two years. She'll never be able to get private insurance, and the kind of jobs it looks like she's tracking into don't provide it. Because her stuff is "undiagnosed" she doesn't qualify in any of the "disabled" categories that would let her get state insurance. She's going to fall through the cracks. Let's just say it's setting off my Aspie/OCD-about-time/organization-contingency planning alarms all over the place. And that doesn't begin to explain what it's doing to the "but I'm her MOTHER" thing.

Welcome to the land of stealth visitors!

A quick "Hello!" to all, a "Welcome back!" to SleepyDragon, and a "Welcome!" to Weirdobird! I'm putting in extra hours this week, so must be brief. Pulling meds involved? - no, I refused to sell them over a decade ago when Benadryl was shown to cause (infrequently, but still...) psychotic reactions in kids under age 6 years old, and the combo drugs made no clinical sense, and clueless parents (or those who over-medicated against medical advise "to help their children sleep") gave their kids pseudoephedrine containing meds, which can cause irritability, racing hearts, sleeplessness, over-excitability, and irregular heartbeat in kids under age six, teenage girls were drinking it to lose weight and dying of heart attacks, and parents were doping up their kids on dextromethorphan ( a stereoisomer of morphine). Did anyone listen to me? Nooooo..... I've been warning that Tylenol given to women during pregnancy may be causing hip dysplasias in their child that don't show up until their kid hits age 12. Anyone listening to me? Noooo..... And why? Because all of these worst reactions are rare, especially if only given infrequently and are dosed correctly, with consideration given to the child's kidney and liver function. They have been used in millions of kids safely. My argument has always been, why use them when safer alternative methods like saline solution and nasal suction bulbs are relatively side effect free? Because parents lack time and go for things that are convenient, and have been brainwashed by commercials that a drug is necessary for every ache, sniffle, cough, and fever. I'm just more conservative and cautious than most health care practitioners you'll ever run across. I don't want to cause harm to anyone, and denying the meds rarely does. [In my corner, they are now finding out that if you will let a young kid under age two have one or two really good coughing spells (rather than treating it with cough medicine), later in life they are less likely to develop asthma.]

The Tylenol question - would be almost impossible to prove. Very hard to link a problem that occurs only rarely, which doesn't show up until age 12, to a drug a kid's mom took while pregnant. Still, I have my suspicions. Can't prove it.

Bottom line - there is probably a good reason why no one listens to me.

Anyhoo, I had none of the drugs that were voluntarily recalled on the shelf to pull.

Similar but separate - I have done a preliminary study of the research available as concerns thimersol in vaccines causing autism. I may be wrong, and may change my mind after I study the research further, but I doubt it causes autism. I may change my mind if I see that thimersol in some way effects HOX genes in the brains of growing fetuses. But the pregnant mom would have to be the one who took the vaccine that affected the HOX gene in the fetuses' emerging brain. (If HOX genes are involved in autism at all - may be - if we truly are wired differently. Worth looking into anyway.) I have not seen any such research as yet, but the research may exist and I haven't found it, or it may be being investigated currently and not yet published - not sure. If I was investigating, I'd take a look here.

I did not get to see the CNN program about Omega 3's, so cannot comment on it intelligently at this time- But I will research it when I have time off in November. Here's a link with pretty good info on Omega 3's, but am not sure if this answers your question:
http://en.wikipedia.org/wiki/Omega-3#Autism

As concerns the Vyvanse experiment: I gave it another 2 day trial, and did get somewhat used to it (the headache finally stopped while on it), but it made my blood pressure rise from my usual 110/ 65 to 130/85, my pulse rose from my usual 60 beats per minute to 90 beats per minute, and I sweat like crazy every time I took it. So I discontinued it. Too much "down side", not enough "positive side" to it. So sorry Merle - I can't share. Don't want to hurt you!

Well, I've rambled enough and probably made no sense at all. Just like always.
Have a great day all!

Chuck

(Hartz - while I was working last night the thought occurred to me that fibromyalgia may be caused by excessive Substance P in the spinal cord (or an abnormal response to it), but I don't even know if Substance P exists in the spinal cord ( I know it does in the peripheral nerves). I'll check this out when I have more time. I was thinking about what you said about developing ADD-like symptoms after taking the meds they put you on, and I wondered if what they gave you lowered your dopamine or norepinephrine? Then my ADD brain jumped to your fibromyalgia and I went over the 60 neurotransmitters in my mind, and I started wondering about Substance P. If I was investigating fibromyalgia, this is one thing that I would look at, and they maybe already are - don't know and haven't had time yet to look. Ain't you glad you don't have to go through life like this? ).

One thing that I have learned over the years, a clinical "pearl", that almost always is true:

If the patient is under 60 years old and has 20 different symptoms, there is usually one common cause.
If the patient is over 60 years old and has 20 different symptoms, there are usually 20 different causes.

I think your gut is correct. One more thing for me to research when I get some time off!

I'd appreciate that, Chuck.

In the summers, when it's slow at work, I've burned up PubMed and the others. I know about the Israelies and the Japanese guys with the idiopathic anhidrosis. It doesn't quite fit. Nor do the Ectodermal Dysplasias, really all 120+ of them - they don't explain the neurological things. And she is hypersensitive to pain, not hypo. There's something else at work. Maybe more than one thing? Both ED and dysautonomia? The geneticist says she's never seen anything like it, but did use the kid as a poster at a conference in the hopes someone there might have. No dice, so far. Hence the Vanderbilt Center visit, if ever. Dunno, just dunno....

They do tend to think it's genetic. Had several seemingly competent types say that now. Some if it does surface in me, in very minor ways. My sister had all sorts of allergies and connective tissue issues. My mother also seems to have had a lot of issues.

The Aspie thing is on my dad's side. HIS family I've got genealogical research out the whazoo on (big family, and I've got records of a huge pool of descendants) and nothing like her stuff appears there at all. Except the Aspie things. That's separate, I think. And nothing to devote much research time to at present.

My mom's side - well, her father died when she was an infant, of TB. Her mom lived to a ripe old age. I found my grandmother's relatives in Ireland two years ago, and compared notes. Nobody could think of this type of thing happening in any of them (but then, it's cooler there, so not sweating wouldn't have been an issue in that gene pool!).

My mother was an invalid for as long as I can remember. She had a massive ear/sinus infection that remained untreated for almost 60 years - partly because there were no treatments for the first thirty, partly because my father was too cheap to send her for care for the last 30. (Pus was literally draining out of her ear all the time. The infection had spread to the bones in her face and up behind her ear.) Always thought her issues were because of the infection. But maybe not. Too many unknowns there. And with her father having died young, maybe from that line. My mother's brother's family is fine, nothing there that I know of. But I haven't found the genealogy back through her father yet - have only recently found he had a brother, and had some contact with those folks but lost them again. All the brother's children were female, so if it was passed through that mechanism, maybe it'd have shown there. Damn...

Have nothing at all, really, on the kid's father's side. That's a problem. Though I have found them in the records and am going to be requesting death certificates (lists causes of death) when I have time. To see if there are any patterns.

Thank gawds for PubMed, etc, though, for now!

There's no huge hurry- she's 20. We've dealt with it for 20. Thanks.

My boss just phoned to tell me that I'll be teaching a class this evening! I have successfully avoided it so far, but I think my luck just ran out. It doesn't matter how well I knit, when I have to teach someone else, I forget everything. And I haven't even looked at the pattern! This is what the ladies are learning to make:




My mom made the store sample so hopefully she'll come in and help, at least just to get the ladies started and then I can take it from there. So much for no stress, i'm nervous already!! Maybe I'll buy the yarn and make it along with them. That may help! EEEKKKK!