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RE: Please Respond -- Symptoms of Neuro Illnesses - 6/27/2008 4:29:16 PM   
Aswad


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To suhlut again,

Some people in my social network are at risk for Huntington's. That prompted me to read up on it more (most of my reading otherwise deals with conditions that are less tied to the genetic factors, such as depression, anxiety, OCD, etc., although I have studied various aspects of how the mind and brain work), and when you mentioned it, the symptoms just didn't seem to be related.

As for the triple repeat... as I recall, a seven-repeat allelle of DRD4 is implicated in a series of conditions that I have a certain interest in (PDD spectrum, incl. ADD, ASD, etc.), and the triple repeats in Huntington's are, if my memory serves, related to the glutamate system (which is also implicated in things like depression, tolerance, addiction, and so forth). The latter probably explains why that bit stuck in my memory.

In the OP's case, my impression is more along the lines of a mass of some sort, unless he has a previously patent fovamen or somesuch. However, I'm obviously not qualified to say, beyond noting that it needs looking into. And I don't buy that he may have had himself checked out already, yet somehow still gets to keep his licence despite what is described here as motor degeneration.

Anyway, my best wishes go out to you, and if you've not taken the test yet, my fingers are crossed as to the result.

Health,
al-Aswad.


_____________________________

"If God saw what any of us did that night, he didn't seem to mind.
From then on I knew: God doesn't make the world this way.
We do.
" -- Rorschack, Watchmen.


(in reply to suhlut)
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RE: Please Respond -- Symptoms of Neuro Illnesses - 6/27/2008 4:47:53 PM   
suhlut


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Aswad,
       Thanks for explaining, i often find it interesting when i find other people that know about the disease, but i am sorry that it turns out to be people You know whom are at risk.
        While i have studied Huntingtons, just because of my 50 % risk, i havent ever really understood a whole lot of what i've read, and only certain things seem to stick in my mind..lol
         So while what You say sounds about right, in regards to where You say "As for the triple repeat... as I recall, a seven-repeat allelle of DRD4 is implicated in a series of conditions that I have a certain interest in (PDD spectrum, incl. ADD, ASD, etc.), and the triple repeats in Huntington's are, if my memory serves, related to the glutamate system (which is also implicated in things like depression, tolerance, addiction, and so forth). "     i cant really say for sure,as it hasnt seemed to be an area that i've studied, or if i DID, it wasnt understood, nor comprehended.

i am studying here, from a brain thats not exactly interested in learning Doctor type level information, and instead just have read what i can to simply be able to clear things up, and help me understand what happened to my mother, and what may happen to me,and my siblings.

anyways, no, i havent been tested as of yet, i need to get a few things straightened around in my life, before i would be prepared to possibly accept how such a result will mean to me, along with other aspects. i am planning on it rather soon though, and figure within 6 months, i'll know one way or the other for sure. My brother has just gotten his blood test done, about a week ago, and we are now awaiting his results, which will be somewhere around 2 to 6 weeks.
 
i  do feel like i have beginning symptoms, and they scare the shit outta me, so, i thank You so much, for Your well wishes and thoughts.
~s 

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RE: Please Respond -- Symptoms of Neuro Illnesses - 6/28/2008 9:16:06 PM   
Aswad


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You'll be in my thoughts, either way. Such symptoms can be frightening.

Feel free to PM about that if you'd like an attentive ear.

I do wish you...

... health,
al-Aswad.


_____________________________

"If God saw what any of us did that night, he didn't seem to mind.
From then on I knew: God doesn't make the world this way.
We do.
" -- Rorschack, Watchmen.


(in reply to suhlut)
Profile   Post #: 63
RE: Please Respond -- Symptoms of Neuro Illnesses - 7/15/2008 8:53:46 PM   
suhlut


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Brother just got his test results back.. and turns out he does have Huntingtons.. just learned his results tonight. *sigh

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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/15/2008 10:28:10 PM   
GreedyTop


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*hugs to you and yours, suhlut*

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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/15/2008 11:51:23 PM   
suhlut


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Thanks so much ~again~ for Your thoughts GreedyTop.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
the following isnt directed at You Greedy, but instead a rant i just have to get off my chest.

i hate this disease so fucking much, and have felt for a long time, that while no "cure" is likely forthcoming..at least anytime soon, it could SOOOO easily be eradicated in future generations, simply by having it be possible, made cheaper, and offered and encouraged for those whom have the disease, if they wish to have children, then simply have eggs/sperm harvested and create "test tube babies", and then testing each resulting embryo for the Huntington gene, and only using the ones that are without the disease, to be implanted back into the mother.

i know i know i know, i have so many controversial ideas with stem cells, fetal cells, and now this selective harvesting.. (which YES is possible, today,AND being performed,  but it is expensive and not given to people as a viable option), and i HAVE concidered the argument that i may have not been born myself, if such a test had been available to my own mother, BUT..  i dare those whom look down at those of us that share my idea, to examine howd they feel if they faced the same possibilities.

It makes me SICK that people in the Government, can decide for everyone that fetal stem cell research and other things of the same ilk, to be wrong, or immoral, and make laws against further research. President Bush, if HE faced something like Huntingtons, surely wouldnt have felt there anything wrong with the reasearch, but because he feels "safe" from any potential risks in his life and that of his family,that such reasearch might help, so, its okay to stand on some milk crate and preach and preach his campaign to make reasearch illegal.

As a result, the US has dropped so far back in the running, and China took over. At least President Bush couldnt make it illegal/immoral THERE.

i think that people whom face any hereditary disease, should be given, free, or very cheaply, this procedure. No cure yet, for those already ALIVE with the disease, but within a few short generations, there wouldnt NEED to be a cure anymore.

And, yes, i have faced those people with the argument that anyone that faces hereditary disease, should simply NOT have children.

But face it, people are just not going to stop living their lives, and wanting a family, to reproduce, to carry on , with a dream that a cure will be found. 50/50 odds arent great, no, but its not like each child born to a person with Huntingtons is at a 100% risk of getting the disease, and many many huntingon patients gamble that risk percentage, by having children. (i have 5 myself)

The suggested harvesting would mean that no child ever need be born again, with the disease...............that to me, spells C U R E.

(in reply to GreedyTop)
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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/16/2008 6:08:40 AM   
thishereboi


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quote:

ORIGINAL: GreedyTop

quote:

i'm not sure even now what to say to him, if anything


Yet you have no trouble discussing his health issues with faceless strangers on a public message board...

oy.



Ok, now I am confused.....Is pinkieplum and pinksugarsub the same poster?

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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/16/2008 6:30:56 AM   
wandersalone


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quote:

ORIGINAL: thishereboi
Ok, now I am confused.....Is pinkieplum and pinksugarsub the same poster?

Yes.  She mentioned her name change in the intro thread a while ago.


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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/16/2008 8:13:20 AM   
angelikaJ


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hugs to you!

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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/16/2008 9:05:15 AM   
LadyRainfire


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suhlut, you and your brother are in my thoughts and prayers. May you both find the strength and courage needed in the difficult times ahead.

Peace and blessings to you.




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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/16/2008 10:50:34 AM   
wandersalone


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suhlut ..... you and your brother are in my thoughts

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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/17/2008 9:37:43 AM   
suhlut


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AngelikaJ ~ thanks for the hug!

LadyRainfire ~Thanks for the thoughts and prayers.

wandersalone ~ thanks for your thoughts

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Boy its strange what happens when being so self absorbed in your own fears, about your own well being, to find out all the while, i just kept thinking, "He (my brother) doesn't have it.." to be hit over the head with such news, that he does, is a real eye opener.

i've learned that i wasn't nearly the aware person i thought i was, because now that my eyes have been opened to that truth, i can see every lil thing i apparently overlooked before. If i'd have payed attention enough, he wouldn't have needed to be tested, i could have told him. The signs are all there.

It's killing me, to look at him, watch him, and see the same things, that our mother went through. Perhaps i was in denial? Maybe, but i also think i was too simply self absorbed, to have seen it before now.Blind, yep that was me.

i have aside from that brother, four older sisters, Three of whom are around in my life, but the other was one my mother gave up for adoption, that we found right before my mother got too sick, so they were able to meet,and spend time getting to know each other, but i just dont think she could handle the truth, of now having to face a possible hereditary disease, so, our relationship with her, died off,and she moved away,and despite several attempts at writing to her, all my letters were ignored.

The oldest two sisters, are both well into their 50's and from everything i can see,neither of them have the disease.

The third older sister, i am concerned about, i think its a possibility that she has it.

And then theres me, and well with me, i go back and forth, scared of every lil twitch, every slurred word, and then i have moments, where i think i don't have it. i am tired of that back and forth crap, and its time for me to find out.

And then after me is my brother. He is almost 35 years old, has two children, and will spend the rest of his life, knowing. If anyone prays for him, and my family, pray for a cure, and even more important, that none of the children in this family, ever have to face it themselves.

i am often pleading in my prayers, that it doesnt matter if i have it, but please, oh pleaseeee none of my 5 children!.

So, anyways, i spent several hours with my brother yesturday, and found myself often staring at him, when he wasn't looking. He and i didn't have very ideal childhoods, and we both grew up disliking and sometimes hating each other, but i am ever so greatful, he and i talked many years ago,as adults and got over all of that. i am so glad it was resolved then, and not now, i'd have hated to think that the disease was what brought us back into each others hearts.

It was awful, looking at him like that, seeing things i hadnt noticed before, and seeing visions of how my mother had been so similar. i love him so much. And thats what makes all of this so awful. i've been experiencing somthing all new lately, a whole new thing to worry about, that hadn't ever crossed my mind before~

And that is, where i question myself, what if i don't have it? Will he learn to hate me? How do i deal with the guilt of knowing i don't and he does? And worse of all, how am i going to live the rest of my life, watching as he changes and deteriorates?

i spent so much time, inside this self absorbed cocoon, where i was convinced none of my siblings would inherete the disease, that only i would. That the bad things only happen to me. (Aside from this, theres so many awful things that i have lived through/experienced, that i doubt anyone would believe me, if i ever dared write it all down and tell) And i guess there was lots of anger in my self absorbed state, anger at my siblings, anger at my mother.

And wow, that anger at my mother would be a WHOLE other story to write down...

Anyways, my eyes are open, after reality conked me over the head, and i see so many new and awful things.

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(in reply to angelikaJ)
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RE: Please Respond -- Symptoms of Neuro Illnesses - 7/17/2008 10:32:25 AM   
GreedyTop


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quote:

ORIGINAL: thishereboi

quote:

ORIGINAL: GreedyTop

quote:

i'm not sure even now what to say to him, if anything


Yet you have no trouble discussing his health issues with faceless strangers on a public message board...

oy.



Ok, now I am confused.....Is pinkieplum and pinksugarsub the same poster?


yes..aka candystripper

_____________________________

polysnortatious
Supreme Goddess of Snark
CHARTER MEMBER: Lance's Fag Hags!
Waiting for my madman in a Blue Box.

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Profile   Post #: 73
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