Further testing or not? [Archive] - Intersex Community Forums

FoggyOne

04-02-09, 05:57 PM

some of your cells are normal, some are Turners mosaic, thats what the damn 45X means, and some are 47XXY klinefelters.
think a PCR would give you better ratios as a result so you'd know better in what percentages you have to each variation.
now just as im curious as all hell and love asking questions , have they your docs reccommended a PCR or Fish studies?
Thats what I'd like to know too... what percentage, if any, is 45x and what percentage is 47XXY. The test reads as if it was ONE cell that was 45x and that the same cell was also 47XXY but I think that is impossible. The test resutls were: Normal male: 46XY.

PCR or FISH? I had to fight for years to get what little testing I did get. Docs think I am malingering and should merely take meds for hypertension and go away. Atleast thats what they thought when the test was taken, its a few years old now.

PCR is, I assume, Polymerase Chain Reaction and FISH, I assume is Flourescent In-Situ Hybridization. I seem to recall those terms out of the clear blue so my mind is not as "gone" as I think, but I can mainly recall OLD knowledge rather than new experiences which seem to sort of "leak" out of my brain.

I have no insurance but have been informed that I will soon qualify for MediSomething which might cover some tests. Do you know the approximate cost of the tests? If I decide to get further testing, I KNOW it will be a battle to find a doctor who will focus on my complaints rather than hypertension.

Kailana

04-02-09, 06:07 PM

do you have the report, did you get a copy for your self from the hospital.

I've gone through the same for years by the way. that stupid cheap blood karyotype is missleading and the part that just says Normal 46XY is what gets me the most. because the lab work that they do show actually rules out just a 46 XY karyotype.<----that is what all the yahoo doctors i've seen over last decade really cared about. Its like just look at the rest of the information and read what else is there in the report and you'd understand just how much more is there. Or read the lab reccomendation to do a PCR and then tell me my karyotype is normal when the lab work done allready is telling you and anyone else who reads it that there is more then just 46XY cells present.

mind you a PCR isn't cheap, 1200.00-1500.00 depending on what lab is doing the testing and lots of hospitals like adding on fees too.

but the only way your gonna get a better answer with more detailed information is to pay for a more detailed test to be performed. Most doctors won't even order em, cause they only care about the cells that are normal.
I really think there is alot more bigotry and missunderstand because even doctors have their own personal beliefs about what men and women are.

Intersex is not an easy subject matter for them learning to accept that intersex is a normal variation of humanity does alot to people, shakes their root core sometimes, breaks their own personal belief system, religous and moral ethics as well. Sometimes just cause we are different they actually treat us as different becuase they are not ready to accept us because we do break their beleifs.

Kailana

04-02-09, 06:12 PM

is very expensive not sure exactly on cost and ranges really high depending on how many and how detailed the study is. I know its more then the PCR, just unsure how much more, because i've seen to many different prices for different amounts of samples tested. generally dbl to 10 depending on how much is done, how much is tested.

FoggyOne

04-02-09, 09:55 PM

do you have the report, did you get a copy for your self from the hospital.Yes. The report reads Apparently normal male, 46XY Karyotype. It goes on to discuss that one cell was found that was not 46XY and that they therefore examined ten additional cells each of which was 46XY.
From my reading of the report it seems that they did not consider the one cell described as 45X/47XXY as being sufficient to change their opinion that the karyotype was that of a normal male, 46XY.
Its merely that in going over my old records I'm trying to find "the answer" the doctors long overlooked and I thought this genetic testing might not have been as thorough or as precisely reported as it should have been.

Kailana

04-02-09, 11:05 PM

is likely to be actually. really need a more detailed study to get better answers.

as a side note, it has also been stated by several that there are likely many possible variations in cells in people and really the only way they judge a person as having seperate cell lines is if they have a high enough ratio mixed throughout that allows for a decisive enough determination that it is in a ratio to fit. Just means they are convinced that your predominately male regardless of the little flukes that might be there. I wouldn't be surprised to see another karyotype that might mention the possibility of low level mosaicism as well, too low to be determined by the testing method used. haha, i've got one of those as well, I tend to discount it though becuase that one actualy has no information what so ever other then states normal male karyotype, no data is reported to support or validate a 46XY karyotype.

FoggyOne

04-03-09, 05:58 AM

Just means they are convinced that you are predominately male regardless of the little flukes that might be there.My concern is for what tissues have those "little flukes". Apparently they tested white blood cells obtained from a blood sample taken from my arm. I know from crime shows on TV that often a cotton swab of the inside of the mouth is a source of cells too. I just wonder if a different source of cells would show different results.

I am short and fat, not the usual Klinefelter's habitus of tall and slender which is one reason the docs did not want to even order any genetic tests for me, particularly for Klinefelters. I've looked like a pregnant male since age 12, but doctors have routinely ignored all hormonal issues and all genetic issues, dubbing me as "depressed".

Kailana

04-03-09, 06:52 AM

is that your klinefelters mosaic so share some traits with both klinefelters and some with turners mosaicism, and for those who are reading that is the 45XO cell line caused by a missing second sex chromosome, lots of genetic errors that all fall under Turners.

since 12? just wondering if it is only a weight issue then rather then a side affect of genetics, or well could also be due to puberty and hormone changes. how old are you now?

I can only really compare your build to my own, that pregnant belly that I had as a toddler, young child, eventually I lost in my teens, and didn't see again really untill i hit 30 when I plumped up again due to depression and lack of exercise, haha also some im sure due to diabetese/borderline that is, since I am not actually diabetic, just was heading that way.

is it possible that perhaps it could be insulin related? have you been tested for diabetes? cortisol levels as well. perhaps there is a correlation with body fat, and estrogens levels as well cause that happens too, with higher %body fat, estrogens levels increase, and just to make things simple, I would like to remind people that the split in estradiol levels and men and women are very close together. which isnt the case with testosterone, really large difference with T in men and women, but well estradiol at least theres really only a small difference from the top of the normal male range to the bottom of the normal female range.

just thinking by the way.

Calie

04-03-09, 11:32 AM

This is all very interesting. Been following posts in this forum for some time but have never made a post myself here.

I have a physical scheduled for next week. I would appear to have many of the signs of a KS mosaic and have my speech planned out so that I can propose to my doctor that I be tested.

My question is: How much and does insurance cover any of this? I see the PCR cost of 1200-1500. US dollars, Kailana?

FoggyOne, what was the cost of your blood test and, specifically, what did you ask your doctor for? Did insurance cover yours?

I have done a LOT of reading on this subject over time and am finally getting up the nerve to have a discussion with my doctor about it. Appreciate any comments.

Aseras

04-03-09, 12:26 PM

It really depends on your insurance AND how the doctors codes the procdure and diagnosis when they submit it to the insurance company. A good doctor will know how to do that so it won't be a problem.

Peggy

04-03-09, 01:46 PM

Hi all,

Kailana please forgive my ignorance, how does it work to use PCR to detect mosaicism? I had thought that the only way was karyotyping (possibly from different tissues).

Also, a note to FoggyOne: when a karyotype shows a single atypical cell of a particular kind, it often does not mean anything. Everyone has a small fraction of various kinds of atypical cells. That is why they always look at multiple cells.

Friendly greetings to all,

Peggy

• • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning. When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

Aseras

04-03-09, 02:37 PM

I would think PCR would magnify an error or a problem. PCR replicates DNA over and over again to give you a larger sample to look at.

A karyotype would be or should be the most accurate provided that a adequately large volume of cells are examined. There, if you see 1 cell or a few it means there is something.

Keep in mind in mosaicism or chimerism. It's not like every cell is 50/50 or they are in any particular proportion. It can be differing cells everywhere or only in very specific parts of the body. A variation may not even show up in a normal karyotype from blood or a buccal smear.

The other thing to point out is that a karyotype is prone to significant human error. Every cell has to be examined, have each chromosome mapped and placed in it's proper place. I can be very easy to mix something up or mistake one chromosome for another in a long process. The chromosome don't line up all nice and neat. they are jumbled all together and it's a puzzle to pick them aprt and arrange them by size and banding.

And then even with all that, and you get your "answer" it's not going to make a lick of difference except in your wallet or pocketbook. It doesn't solve anything. There's nothing you can do about it. Just be careful about getting into a quest for answers that are fruitless.

The Female Eunuch

04-03-09, 09:02 PM

Kailana wrote:since 12? just wondering if it is only a weight issue then rather then a side affect of genetics, or well could also be due to puberty and hormone changes. how old are you now?

there is a difference between looking pregnant and being fat - pregnancy is characterised by a specific bump round the belly region. I'm not particularly fat, but I do have a bump that can make me look pregnant, depending on what I'm wearing. Doctors tell me it's probably just scar tissue from previous surgery. It first appeared after surgery when I was 15, and very thin.

cheers,
Caroline

The Female Eunuch

04-03-09, 11:56 PM

Peggy wrote:Also, a note to FoggyOne: when a karyotype shows a single atypical cell of a particular kind, it often does not mean anything. Everyone has a small fraction of various kinds of atypical cells. That is why they always look at multiple cells.

so then, how many atypical cells does someone have to have to count as mosaicism? Is the distinction between mosaic and non-mosaic an arbitrary one?

cheers,
Caroline

A to Z

04-04-09, 03:35 AM

I'm 5' 6", 200lb, wingspan 13cm longer than my height... diagnosed with PAIS-1 in 1985 , and as a "severely androgenised non-pregnant woman" in 2005. Simple Karyotype (25cells) was 46xy.

For why I was given vast numbers of MRI, ultrasound, bloodtests in 2005, well, my endocrine system went odd. I lost 1/3 my body mass in 3 months,with somatic changes about the equivaent of 3-5 years of HRT in the same timespan. My 400+ LDL level went below 100, too.

I transitioned, as my gender identity had always been female, and I didn't "pass" as male any more anyway.

Nearly 4 years later, the causal mechanism eludes us.

So yes, more tests would be useful, but don't be surprised if the results don't fit any standard IS condition. There's a lot we don't know.

Kailana

04-04-09, 04:09 AM

lots of questions in there that are well important to answer. The simple explanation is that the usual blood karyotype only looks at 20 cells, which is an extremely small sample to rely on. if you have a complete report, it will show you just how many cells were looked at using die and a microscope, how many were examined under electro microscope or what ever thats called, i'd have to look again to get it right, and how many cells are actually karyotyped, along with that information will be the banding pattern range of the cells analysed.

Now as I have had several karyotypes from different hospitals over many years I have seen and looked at all kinds of ways information can be ignored.

banding pattern ranging from 400 aparantly normal range to 550-650 which is actually quite abit above the normal range for male. too also including both complete chromosomes and partial chromosomes identified. And too just 46XY with no data at all supporting an actual 46XY karyotype, report just says its normal. what gets me is that I have allready been dx'd as XY/XO have known that for years so me seeing a report that does show lots of abnormalities or a few, all pretty much tells me the same thing. yeppers im XY/XO, but what gets me is the cells that are actually karyotyped, ie either 2 or 4 out of each sample tested were infact 46XY normal cells and I could care less about the normal cells, I really want to see just how many and in what % are the partial ones, the ones with the unusually high banding pattern. Those are the ones that interest me.

oh and general the standard blood karyotype runs around $75.00 tests 20 cells, bucceal smear $350.00 dont know how many cells it checks, PCR usually $1250.00-$1500.00 tests 1000 cells, sometimes more sometimes less. price can be higher or lower depending on how detailed, and FISH is highly variable $3500.00+ with a huge range in prices depending on how many test samples are tested and how much detail. Often a PCR is a repeated test after a FISH is allready done and confirms a possible genetic defect. There are a few other tests out their. think i have link to some prices for specific tests from one laboratory. when i locate it i'll post a link, haha can't find it now.

I really ought to scan some of my karyotypes results to show you just how little can be reported or how much. think I might do that just so people have a reference to understand why I trust some more then others.

Kailana

04-04-09, 04:17 AM

this sight isnt to bad, helps explain some of the differenttests, thought they had a page as well that explained accuracy of tests for different conditions,

http://www.genedx.com/genomedx.php

I know there are other testing companies that I had links too, nice price lists as well, can't find them now though. might be some of the info on my old computer, and well that hard drive is sitting on a shelf. comp died.

FoggyOne

04-05-09, 12:59 PM

>I'm 5' 6", 200lb, wingspan 13cm longer than my height...
Humorous manner to express this in. I know arm length has some diagnostic value as does Head to Pubic-Bone and Pubic-Bone to Floor ratio. I don't recall just how specific any of those ratios are though.
>diagnosed with PAIS-1 in 1985 , and as a "severely androgenised non-
>pregnant woman" in 2005. Simple Karyotype (25cells) was 46xy.
I don't know what all these abbreviations are. As I understand it you were genetically "destined" to become a male but in the womb you failed to respond significantly to any androgens. This would mean female brain with small male genetalia I think. I'm not really familiar with PAIS at all.
>There's a lot we don't know.
I've always had trouble getting doctors to order tests. They want to say 'you are depressed' and yet never order tests for that either. You are right though. "There's alot we don't know" ... and the more people look the more they are finding. Chimerics seem to be more frequent than ever thought. Mosaicism seems more prevalent than ever thought.

Anyway: to answer the various questions that have arisen in this thread.
I'm in my sixties.
The test report reads:
Metaphases examined: 20
Modal Chromosome Count: 46
Band Level 450-550
Banding Technique GTW
Metaphases Captured 3
Karyotyped: 2

Cytogenetic diagnosis. Apparently normal male karyotype.
Karyotype: 46,XY
Comments: A total of 20 cells were examined from routine and syncrhonized cultures, 5 cells were analyzed for numerical or structural abnormalities and 15 cells were scaned for chromosome count and sex chromosomes. No numerical or constitutive structural abnormalities were noted. Routine cytogenetic analysis will not detect low level mosaicism, subtle constitutive structural rearrangements or microdeletions.

Note: One cell was 47,XYY and 45,X so an additional 10 cells were scanned for sex chromosomes. All found to be normal therefore this does represent an abnormal clone.

New molecular testing is available to identify submicroscopic long arm Y deletions associated with azo/oligospermia.
..........................................................

FoggyOne

04-05-09, 01:19 PM

Additional responses to questions that have arisen up-thread:

I was described as one of the two skinniest kids in the sixth grade and one of the fattest in the seventh grade. The fat would be described variously: central, abdominal, etc. Although some teenage girls in a convertible decades ago probably had the best description of it "Hey, FourEyes, when is it due".

I had long felt rather mild gynecomastia was present but this was never medically addressed. About a decade ago, I did mention the gynecomastia but the doctor said it was merely an effect of my obesity. There was no treatment for the hypogonadism. I was just going thru some medical records I came across and found the Karyotype Report and wondered about it. I'm unable to work but was denied disability so I doubt I would have any money for further testing but did want to find out what tests were appropriate.

Kailana

04-05-09, 06:27 PM

you might think most about getting tested for diabetese. your older, heavy set like me, lol so anydoctor would check that first without even asking questions or batting an eye.

Cuase that could be a big part of your current build issue. Next ignore the simple Karyotype, the standard blood karyotype is what you have allready had done and it just isn't accurate enough to do more then test to see whether or not your cells are infact XY or XX. they really only karyotype a few cells out of that 20 examined, it is cheap $75.00-$125.00 depending what lab does the work, but its not accurate.

bucceal smear can show things that a blood karytotype doesnt. costs a little more but is also harder to get performed. My karyotype from University of Washington is interesting to read, shows alot that my others don't but it was also a downgraded test, i had gone to them to have a bucceal smear performed, and they downgraded the test ordered to a blood karyotype. Still shows some interest results, that the others didn't. I really think the lab techs actually took some time looking at things that werent looked at in previous tests. Also wanted to say that this report, is the one that took me 3 years to actually get a copy of the actual results. cause I was told that I was normal male 46XY karyotype initially and I wasn't shown the actual lab report and eventually it was released and their is a lot more information then just being XY normal male, and they are the ones who recommended the PCR for further testing because they did see alot of anomolies. Was my doctor though that chose to ignore that reccommendation. it happens that often information is withheld because the doctor choses to ignore information at their discretion.

FoggyOne

04-05-09, 10:48 PM

you might think most about getting tested for diabetese. your older, heavy set like me, lol so anydoctor would check that first without even asking questions or batting an eye.Well, I was middle aged when I was going to UWPhysicians in Seattle and told them I had several years before been determined to be "Pre-Diabetic"... you think they ever ordered a current test? Nope, only wanted to yammer at me about hypertension! About a decade later I was using a different HMO and I emailed them about my having unslakable thirst and felt I was in a diabetic crisis. Three days later they replied that I could make an appointment for an office visit and have a test. At that visit they said I had "strep throat" and Rx'd a drug contraindicated for diabetics. The blood draw from that visit did result in a phone call several hours later warning me that the doctor thought I would not survive the night and should go to the ER. (I lived at the time 24 miles from an ER and made the decision to accept death rather than drive in my extreme diabetic state ... obviously, I did live thru the night and made the mistake of going to the ER the next day where my glucose levels were astoundingly high. My experience in that hospital put me off doctors!!).

Kailana

04-06-09, 12:39 AM

why didn't you call a friend or ask to have them send an ambulance? just wondering cuase well dying is a real waste of a life. I know what its like just giving up but seriously well ya know what I mean? have to do everything you can to make sure your treated and taken care of.

FoggyOne

04-06-09, 06:01 PM

>why didn't you call a friend
With a personality like mine friends are few and far between.
>or ask to have them send an ambulance?
Didn't quite think of it. Gate was chained shut anyway, but just couldn't think straight. I was swilling beverages like crazy, even sports drinks which normally I would not have drunk at gunpoint. Alternately, I was eating some pretzles I found so as to be taking in salt. I was lapsing in and out of consciousness and certainly knew that if I drove 24 miles I would likely kill someone in an auto accident. So I just chose to accept my death rather than cause death to some innocent motorists. I tried to call one person for assistance but merely left a goodbye message on her phone machine.
> just wondering cuase well dying is a real waste of a life.
My entire life has been a real waste!
> I know what its like just giving up
I didn't really just give up. I had been told there was no way I'd make it through the night by taking water. I knew my mental and physical state was bad. I knew driving was the wrong choice to make. So I drank when I could, dealt with the delerium as best I could, dealt with the situation as best as my brain could then reason about anything.
>have to do everything you can to make sure your treated and taken care of.
LOL.
Doctors have always denied me treatment.
I was the one who diagnosed low oxygen levels decades before the doctors did. I was the one who found a computer terminal that was lying fallow and used a demonstrator version of DxPlain even though the sign said "clinical personnel only". I typed in what I had been telling the doctors all along and the computer said: Obstructive Sleep Apnea and Secondary Hypogonadism.
Even when I went to UWPhysicians for my Hypogonadism all they would ever do was yammer at me about hypertension! And when I went to a different HMO and finally got a testosterone test, the doctor told me it was "normal" despite the level being in the bottom ten percentile!
Now I'm fat and old and broke. As I said: A wasted life!

Kailana

04-07-09, 12:37 AM

there is no such thing unless it is you who has chosen to make it that way.

now I know that may not be what you want to hear, hell I know there were times I wouldn't of wanted to hear those words either. Thing is I know i've been ignored when it really mattered. hurt kind of bad when I knew those who should of been listening weren't.

im sort of old haha, though many still call me a baby. honestly you would probably be one of those who do as well. Still though for a 38 year old, I really feel like my life is just barely starting. I might be miserable from time to time but overall i'm really ok. Broke? haha ok now I know what thats like, and it's ok too, I may not have lots of spending money lying around, but it's ok, I can feed myself with assistance. --haha--. Seriously if it wasn't for VA Compensation and SSI I probably would still be well long on my way into a realy close death due to diabetese. With SSI and our Food Stamp program I can eat descent food at least. Now I know there are people who would see me as a leech on society. I am basically one of those many welfare people who don't do a whole lot. I am trying though, was going to school vocational rehab/retraining into a carreer I could do. Was is the big key word. I'm having some issue's with repeated tuition problems all stemming from again depression and a late withdrawal a year ago. I still haven't given up though lol.

See that I think is what makes me a somewhat ok person, I don't give up or if I do not for long. <depression does make me do and feel some pretty crappy ways at times.

I also know some people might say a whole lot about me, and ya know what, its ok too. I am fairly happy these days, i have hope and dreams again. <---that is a huge step for me. Cause for the longest time I really did just want to die. I did feel dead inside and that feeling/those feelings all stemmed from finding out I had some fairly unusual anatomy.

I know doctors can treat people like crap, i've been in similar situations many times, for many different reasons. Yet I look at some of my more rescent visits to the ER and ya know what, apparently there are some people listening to me, cause I have been treated a whole lot nicer then previously. I am not exactly sure if it is what is written in my records when my name pops up, but well for whatever reason I am treated with a lot better respect by admin clerks, nurses and doctors. <---that is an amazing change for me. Didn't expect it, cause I do have some real crappy experiences, but I am well liking my life better now. I am seeing people treat me a great deal better then previously.

So hay we might of had some crappy experiences, but that doesnt mean we had or have a crappy wasted life.

oh and just a reminder having testosterone levels in the bottom 10% of the male range technicoly would be considered normal. now then if they had been 1/2 the bottom level of what is considered the lowe range, ie like my 197ng/dl out of 400-1200 ng/dl at 22 years of age while living a very physically active life well then I might agree with you that yours were low. sorry im well splitting hairs over lab levels. I do think it is relavent what we are doing when we are tested, what age, what level of activity and everything else. It is important to remember that our bodies fluctuate tons, hormone levels vary alot depending on what we are doing. So well being at the bottom might not of been of that big of a concern to your doctors. Now mine back when I was tested, they were interested and actively looking for answers. So I also know what it is like having doctors who are trying to help me understand whats going on, and also know the years afterwards when doctors chose not too. It does help me understand different aspects and experiences and is also why I understand and know just how bad I have been treated, because I was not always treated as you are now.

just hang in there. regardless of how your feeling at the moment, well dangit how do i say this right?

Demand better treatment. kinda blunt i think but well maybe start working on your self esteem first, find some happiness and when those docs of yours notice that your well feeling better, doing better, findingyour own happiness in this crazy little world then they might actually understand that your questions actually serve a purpose that might help them and you understand each other.

The Female Eunuch

04-07-09, 08:46 PM

Foggyone wrote:>why didn't you call a friend
With a personality like mine friends are few and far between.

I can identify with that. When I was aged 12 and 12, I had almost no friends, and I assumed it was something to do with my personality. Thankfully, things got better.

[QUOTE]>or ask to have them send an ambulance?
Didn't quite think of it. Gate was chained shut anyway, but just couldn't think straight. I was swilling beverages like crazy, even sports drinks which normally I would not have drunk at gunpoint. Alternately, I was eating some pretzles I found so as to be taking in salt. I was lapsing in and out of consciousness and certainly knew that if I drove 24 miles I would likely kill someone in an auto accident. So I just chose to accept my death rather than cause death to some innocent motorists. I tried to call one person for assistance but merely left a goodbye message on her phone machine./QUOTE]

I suspect that your inclination not to bother had a medical basis. There have been two times in my life when I was happy to let myself die. One was caused by me being too cold (hypothermia) and the other was caused by me being too hot (a fever from a kidney infection). You can't think rationally when your body's all mucked up by something like that. You're lucky you survived - in both those cases I only survived because other people intervened to save me.

cheers,
Caroline

FoggyOne

04-09-09, 06:54 PM

Does anyone know if US Social Security regulations consider Klinefelters to be disabling due to various deficits in functioning?

Aseras

04-09-09, 09:39 PM

Does anyone know if US Social Security regulations consider Klinefelters to be disabling due to various deficits in functioning?

Doubtful based on just that diagnosis, but like all things, shop around enough and you can find a doctor who will say anything.

Kailana

04-13-09, 01:09 AM

a very few genetic condition's that they do acknowledge as dissabling. Down Syndrome is the only one I actually know of by the way. I am sure there are others.

Mostly though I would really think that when it comes to SSI it will be the lifetime of documented medical issue's that will provide all creditable evidence of dissabily or limitations to employment levels limited by physical or mental restrictions. ick thats all jumbly. the medical records and evaluations by the medical staff that acknowledges actually physical limitations is whats going to count for SSI. without those hospitals seeing you , anything you say will just be in doubt. All medical evidence listing your physical or mental limitations will be passed along, if they are allready in your medical records. not your personal copy by the way, but in the records those hospitals actually send when an SSI case/hearing judgement is actually made.

dkmn

04-27-09, 11:07 PM

They don't consider it a disability in the US unless it makes it so you can't work and make money. But there are a lot of us that have klinefelters and we don't keep jobs to well. I am 34 years old and I am on job number 45. I can't keep them for to long. Not sure why.

So if I could convince the SS office that I can't work, then I could get benefits.

I have tried. And failed.

Kailana

04-27-09, 11:56 PM

when it comes to SSI, they won't look at what the reasons are you think you can't work, they will look at the reasons the medical professionals will state are you physical and mental limitations. See me I have an awesome brain, quite capable to think and reason, fact is while they only looked at the MBR2 at least I think it is the MBR2, like a 4 hour test to see or evaluate the mental capabilities a person has, I scored well above average to highly intelligent in all catergories. But thats my brain only, and its the physical limitations that makes employment difficult for me. At least the VA though acknowledging I have a genetic disorder really only considers me as having agravated back injuries that were made worse during active duty, due to injury the poor bone structure what they say, has made it harder or affected me worse. I hope that help some explain why I have some VA compensation. now SSI, they at least acknowledge the genetic disorder, or should say the results of having a genetic disorder that they won't actual say which i have, but do acknowledge that it exists and is the reason for the bone structure anomalies that do make physical active a serious issue with employment.

Fact is I know I can still work, quite capable, problem is finding the right carreer and education to support favorable employment. meaning Job retraining which is what i was doing untill the suspected Luekemia came up which turned out I don't have, so far at least. But at the same time that really interferred with my schooling, and having a hell of a hard time getting back in. Sort of feel like i've been in limbo for the last year. Which really does suck tons.

Now newest issue with schooling is that apparently the financial aid office didn't approve me for assistance because they say i will have 150% of the amount of credits they authorize by the time i finish the nursing degree program. what really sucks is I really only needed one quarter of tuition and books covered so i could get off the probation the VA voc rehab had put me on. See they won't reapprove me for job retraining untill I have managed a successfull quarter passing my classes ie with a 2.0 better GPA which isnt to hard honestly. But I can't seem to get the funding to cover tuition for 1 quarter. That has messed up my entire current year and has basically set me back a lil more then a year on my original graduation date.

Sometimes i wonder why life just seems to keep kicking me, lol. Maybe I do deserve some of it, but honestly really think, trying shouldn't be so damn hard all the time. I wrote all this so some of you understood why depression affects me the way it does. You might be going through a similar situation and just wanted to show that yes it sucks, really sucks, but well even someone as screwed up as me, lol hasn't given up, just plans are well on hold for a bit. I know at some point things will get straightened out and I'll get to were i want to be. It is just taking longer then expected.

FoggyOne

05-05-09, 09:15 PM

I am 34 years old and I am on job number 45. I can't keep them for to long. Not sure why.Well, you do seem to be much better at obtaining a job than retaining it. Congratulations on atleast being able to get jobs in the first place.

Do you think it might be inability to focus on a task or to stay focused on it? Or is it more personality issues, perhaps caused by the testosterone levels being so very pulsatile so that you have what might be describd as testosterone rages even though your overall levels are rather low?

dkmn

05-11-09, 06:32 PM

Well the only way lately for me to get a job, is through someone I know. I am horrible in interviews.

I think I just get bored with what I am doing or I get laid off at the ones that I like.

And I never that of the testosterone rage in a low setting. But I do get psychotically pissed off at times. It is very interesting to me. Thanks for the idea.

FoggyOne

05-19-09, 09:18 AM

I am horrible in interviews.
And I never that of the testosterone rage in a low setting. But I do get psychotically pissed off at times. It is very interesting to me. Thanks for the idea.All testosterone secretion seems to be pulsatile. I'm not sure what article I encountered that 'testosterone rage despite overall low values'. I'll try to find it.

One thing I've noticed is that often a major symptom may be lacking but all the rest of the list seem to apply. Most Klinefelters are tall, but not all are.

I'm hypogonadal and therefore bear no likeness to the humungous gonads that a Fragile X sufferer usually has, but upon reading a book on Fragile X syndrome I was struck by how all the photographs looked just like me and much of the textual descriptions seemed to be describing me "to a T" both phsysiologicaly and by behavior, job skills, social skills, executive functioning deficits, etc. There is even a subset who are high achievers, usually in law, the military or engineering... yet these high functioning ones often hit a wall in their 50s and decline sharply thereafter with marked decreases in vocational coping skills.

Ofcourse all my doctors just wanted to yammer at me about depression or high blood pressure and none ever really wanted to do any testing or even run testosterone tests, full thyroid panels, dexamethasone suppression tests, etc. Just take antidepressants and go away or take hypertension meds and go away.

Aseras

05-19-09, 10:31 AM

Ofcourse all my doctors just wanted to yammer at me about depression or high blood pressure and none ever really wanted to do any testing or even run testosterone tests, full thyroid panels, dexamethasone suppression tests, etc. Just take antidepressants and go away or take hypertension meds and go away.

Sounds about right to me. Most doctors don't want to deal with a unusual problem. They go for a quick fix and push you out the door. Very very few will work with you and go over you concerns and check them all out and actually work to solve a problem. It's very rare to find and for someone who has a issue that isn't obvious, it is very frustrating.

FoggyOne

05-30-09, 05:07 PM

Karyotyping results reported as 46XY, yet of the up to 20 cells that were examined atleast one was reported as 47XYY and also 45X.
Would further genetic testing be sensible?
I'm a hypogonadal male but a family medical history makes me suspect a genetic involvement not merely a hormonal one. I've pretty much come to the conclusion that I can not afford further genetic testing and would probably be denied it if I even attempted to get it irrespective of financial matters. I still have a high suspicion of a genetic involvement based on family history, however, I attribute the primary cause of my hypogonadism to severely disrupted sleep which causes there to be an inadequate surge of testosterone at puberty.
I thank you all for your thoughts and contributions to this thread but I've come to the conclusion that any consideration of further genetic testing is solely academic.
I have hypertension, COPD, Atrial Fibrillation, and a host of other rather serious problems but am not on medication for any of them due largely to finances. I did recently obtain an Rx for a gout medication and will embark on that once I can work out the logistics of a more reliable ride to the pharmacy.

Kailana

05-31-09, 08:30 PM

I swear that test is biased.

To inaccurate to justify that your just 46XY. Not enough cells tested especially when the one does show some genetic variation. Now just having the one though, could be a fluke. I am surprised that additional testing wasnt ordered. Because that is what should be done when there is a questionable result reported. The blood karyotype ie testing 20 cells, is sort of like a quick cheap easy test thats not to spendy and sometimes will show their is something different. Too many doctors rely on it to much, especially when the medical professionals actually acknowledge just how inferior and inaccurate it actualy is. Meaning : there is a known 40% inaccuracy rate that they allready know about. Yet it is still used and when something out of the ordinary does show up, will lead to another more detailed test, so its sort of like a cheaper psuedo test, less accurate, subject to false positives and misleading at times as well.

I actually think our good old doctors would be up in a fuss, but apparently many find it acceptible to believe a false answer that is reported rather then find the true answer.

I actually wonder what our education system would be like if all of us were taught using those same standards. ie you get an A even though your answers were all wrong, you found an answer, and its ok if its wrong, you tried. Ok class, everyone got question numer 3 correct, oops welll actually you all got it wrong but since you all found an answer even though it wasnt right, your gonna get a perfect score. Thank you for showing up to class today. Oh and we have a surprise quiz tomorrow, let me give the answers today so we wont have this repeat issue tomorrow. #1. Girls are genetically XX. #2. Boys are genetically XY. 3. There is no such thing as genetic variation. #4. Intersex is not a word. #5. Doctors are always correct.

Ok class those are tomorrows answers. I hope to see everone get them correct, oh don't worry, if you get them wrong you will still get a 100% on the quiz as long as you write something.

Kailana

05-31-09, 08:34 PM

that was a joke.

#1. girls are not just XX.
#2. Boys are not just XY.
#3. Genetic variation does exist.
#4. Intersex is a word.
#5. Doctors are often wrong. no surprise by the way.

Just cause someone has a great deal of schooling does not mean they will understand what it is they have been taught.

FoggyOne

06-05-09, 05:08 PM

Just cause someone has a great deal of schooling does not mean they will understand what it is they have been taught. With me I found it was miscommunication all the time. As part of my intake at one HMO I had been diagnosed with hypertension: I immediately said I did not consider it to be a disease, never would consider it to be a disease, never would treat it, did not want to hear one word about hypertension ever. So thereafter ALL the would do is yammer at me about hypertension! I ask for testosterone testing, they ignore it and yammer at me about hypertension. I brought up my "Cushing's habitus" and suddenly they started talking about it but only with reference to hypertension.

I happened to encounter a computer terminal lying fallow while a software demonstrator was on a lunch break. The sign said Clinical Personnel Only. I had no idea what that meant but I knew it excluded me, however I sat down and entered the same words I always said to the doctors and the computer program spat back at me: Obstructive Sleep Apnea and Hypogoadism. Well, I had complained of lack of oxygen decades before. I had complained of disrupted sleep decades before. All the quacks ever said was "depression". It was the computer that got it right! But the quacks still only yammered at me about depression and hypertension.

I asked about test results and all I get are vague "normal". I ask about sensitivity and specificity and all I get is ignored.

I tell them I was talking to a bicyle rack and they seem to consider that normal. I told them I was unable to know where I was or even what decade it was and had to look at a newsper vending rack to determine that it was not 1960. They ignored that and yammered at me about hypertension. I told them I was getting lost in my own neighborhood and winding up at strange destinations and they ignored me. I told them my car was constantly getting ticketing and towed but they ignored my memory lapses and wanted only to yammer at me about hypertension. Ofcourse the Administrative Law Judge ignored all this too and said I was not impaired in any fashion and certainly was not disabled.