Arguing With One Another On Posts!?

[tiredofdoctors]

I've been a "caller" and a "callee" . . . . and had the same thing happen . . . . . it just does.

I agree with eKatherine about the newbie experience. I went to the ALS forum, asking if anyone had known about having only ONE chromosome with the ALS gene but was having symptoms, etc. Got a nasty response from one man. That was it. I think my thread is gone now *poof* and it was a really important question to me . . . . if there's a chance that I have full-blown ALS, I want to know!!!

I think our forum is very good about debating, bouncing ideas back and forth, agreeing or disagreeing, but providing information that we've found to back it up. It is frustrating when you start getting conflicting information, but that's when the debating part comes in. I can only think of a VERY few people who believe that they are ALWAYS right . . . and I really haven't seen them posting for a long, long time! I think we all know that we can be wrong. From what I've seen, pretty much everyone is very accepting of new information that confirms it, and they don't have a problem saying, "Oh. I didn't know that. Thanks . . . I was wrong."

I have to admit that my opinion may be a little "skewed", as I have gotten so much GOOD information from this forum and so much support. The little arguments here and there? Small potatoes . . . . . .

[jerseyangel]

Lynne,

I pray that ALS isn't what you have.

So, you asked an honest question and the guy was nasty to you? Gee, dosen't sound very supportive to me....

[tiredofdoctors]

Hi Patti!

I'm somewhat inclined to tell that to the forum there. Someone else just did two days ago. His response was "we're not medical people here -- just people with ALS. If you didn't get any help at Hopkins, then (something like) it's probably not an issue." Oddly, when he got back from Hopkins ALS clinic, he said that he felt as though he got nothing out of it except a pat on the back from the neurologist. I guess what goes around comes around. Also, he did NOT pay attention to what I said. I did write back that I was on another forum which was composed of patients, not practitioners, and we all collaborated with each other to help each other find the information we needed. I said that we often asked the question, "has anyone ever encountered this?" which was the same question that I asked them. Haven't seen my post since then.

My genetic testing for SCA (SpinoCerebellar Ataxia) came back positive for "unknown variants on the Aprataxin and/or Senataxin genes" on ONE chromosome. What they have found now is that chromosomes aren't necessarily 50/50 like they used to think. They could be 60/40, 80/20 . . . you get the picture, and the dominant chromosome has the presenting symptoms. What they DON'T know is whether you can present with the full-blown disease with only ONE chromosome when it is a recessive gene. The Aprataxin gene doesn't really bother me . .. . yes, it is progressive, and it certainly corresponds with a LOT of my symptoms, including the occulomotor apraxia/ataxia. It's not life-threatening in itself -- some of the symptoms (like the swallowing difficulty that I have -- ie. choking) can cause life threatening circumstances, even if during choking you would aspirate the food into your lungs. It also corresponds with a lot of symptoms which my grandfather had.

Of course the Senataxin gene -- the gene for ALS -- is the one that bothers me the most. I also don't like the term "unknown variant". There are a LOT of variants on genes that are known -- why is MINE unknown?! So, does the variant cause just symptoms, full-blown ALS, what???? Also, what percentage does this chromosome contribute -- 10%??? 80%????? I really haven't gotten a good read on that. I have to see a geneticist but our insurance only covers PEDIATRIC geneticists -- which I'll admit that most of the time I am fairly juvenile, but the closest is 2 hours away!!! And I will also admit that I haven't been very aggressive with pursuing one, because I'm really scared. I want to know, but I don't want to know. That sounds pretty crazy, doesn't it.

The other thing is . . . is is Aprataxin, is it Senataxin, or is it BOTH???? The lab didn't specify . . . . I would think that a genetics laboratory could get a little more specific than that -- I'm a little disappointed by that.

I guess that's why, other a few serious threads, I've just been posting on the silly threads. I have been pretty down lately, and just plain scared. Armetta and Karen finally made me 'fess up. I've gone back to that "I want my old life back" phase, and right now, given I DON'T have any definitive answers, I think I'm kind of stuck there. It will get better, I know that . . . . it always does.

Enough of the pity party! Maybe I'll go on the ALS forum and cause a little trouble telling them how MEAN they are!!!

Love & Hugs,

Lynne

[gfp]

What's really fun is when you ask "Does product A have gluten?" and someone replies "I called the company and they said nope, so enjoy!" and someone else replies "Oh, no, I called the company and they said it does! Crisis!" (Okay, I'm just being silly when I say 'crisis'. ) But I've had it happen (I've been one of the callees, and the original poster.)

Yep this is certainly one of those. You can call them up and say it says wheat right on the packet....

and I am certainly more willing to believe someone here who called up .... how do I put this... Its not like I think the callers are lying there are 101 possibilities like the call centre has newer info .. or older... or the company have a standard response or they are just evasive or they will just outright lie on the phone ....

I can only think of a VERY few people who believe that they are ALWAYS right . . . and I really haven't seen them posting for a long, long time!

Erm there are a few .... but I haven't seen any of them post on this thread.

Guess what most of those bad threads start off with one persons statement of "fact" somewhere in the thread and they then sit back and watch the thread go to pieces without having to do anything else.

I don't even know if these people beleive what they post or they just post it to ruin the threads!

However blaming the thread going bad on those who correct this misinformation is not really fair.... its like those idiots back at school whos sole reason for existance seemed to be to get others in trouble and beleive me I knew one of them really well because he was my brother. I was always the one who had to fight the bully he spoent a week provoking ... because he was weak and didn't know how to fight his own battles and I see the same thing here... people who deliberatly post secure inthe knowledge they are no longer at school and noone is going to punch them...

[jerseyangel]

Hi Lynne,

I was also wondering why you had not been posting as much--I'm glad that you opened up to Karen and Armetta. Somehow, it seems a little easier to bear when we can talk about what's on our mind.

I don't think you're crazy at all for wanting to know, yet are afraid to find out. I think you're very human, and have been through quite enough already! I would be petrified--but personally, I would ultimately try and find out what I was dealing with because the mind can do a real number on you--with the worry and all.

It's unthinkable that the lab didn't specify the type of gene--it sounds like if they did, you might not be going through hell right now. You know so much about the science of this, it has to be so frustrating to deal with the doctors, insurance companies and labs.

You are in my thoughts frequently. Please keep me posted on what's going on with everything

And do go over to that other site and give it to them good! If anyone can, it's you

[tarnalberry]

I think it's also important to consider that there isn't necessarily a right answer, so what may seem like arguing to one person, who's expecting one black and white answer, may actually be good discussion to others. Not to mention the fact that it can be very, very difficult to determine what is arguing and what is friendly discussion via just written online words. (I've made the assumption incorrectly both ways before, and while more often than not I'm wrong in assuming it's argument and not friendly discussion, I once assumed it was friendly discussion and very nearly terribly offended a friend I was IM'ing. That was bad. )

[Jestgar]

OT, but someone asked the question.

Of course the Senataxin gene -- the gene for ALS -- is the one that bothers me the most. I also don't like the term "unknown variant". There are a LOT of variants on genes that are known -- why is MINE unknown?! So, does the variant cause just symptoms, full-blown ALS, what???? Also, what percentage does this chromosome contribute -- 10%??? 80%????? I really haven't gotten a good read on that. I have to see a geneticist but our insurance only covers PEDIATRIC geneticists -- which I'll admit that most of the time I am fairly juvenile, but the closest is 2 hours away!!! And I will also admit that I haven't been very aggressive with pursuing one, because I'm really scared. I want to know, but I don't want to know. That sounds pretty crazy, doesn't it.

3.2. Senataxin ALS4

...Although a number of terms have been used to describe this condition, Juvenile ALS is probably the most accurate. The condition is characterised by early onset of a slowly progressive muscle weakness associated with both UMN signs (hyperreflexia and extensor planter responses) and LMN signs (distal muscle wasting that usually affects lower limbs initially and occasionally decreased tendon reflexes). In contrast to sporadic ALS, and despite the long duration of the condition, respiratory and bulbar involvement does not seem to occur. Decreased vibration sense and facial weakness have been reported in a minority of cases. The age of onset has varied between families. In the Maryland kindred, the average age was 17 years (range 1–63), while in the European families onset in infancy or early childhood was typical [78], [80] and [81].

Senataxin was initially identified and named when mutations in the gene were found to cause Ataxia-Ocular Apraxia 2 (AOA2) [82]. This is an autosomal recessive form of spinocerebellar ataxia with onset of ataxia in adolescence accompanied in some cases by apraxia of eye movements, elevated serum AFP, and impaired proprioception and vibration sense. Interestingly slowly progressive distal amyotrophy beginning in the late 1920s is a consistent feature and is a prominent part of the phenotype leading to early loss of mobility in some families [83] and [84]. A total of 17 senataxin mutations have been found in AOA2 families, 12 of which are nonsense or frameshift mutations [82] and [83]. Currently, little is known about the function of senataxin. The presence of this domain suggests that senataxin could belong to the group of genes associated with motor neuron disorders with possible roles in mRNA biogenesis or regulation that includes both IGHMBP2 and SMN1 itself.

All of the articles say RECESSIVE, which means you need 2 genes with the mutation. NONE of them suggest a partial phenotype with one copy.

[Jestgar]

The other thing is . . . is is Aprataxin, is it Senataxin, or is it BOTH???? The lab didn't specify . . . . I would think that a genetics laboratory could get a little more specific than that -- I'm a little disappointed by that.

Yeah! WT*!

They're on two completely different ends of the chromosome!

APTX also has very little info. But says mainly early onset, recessive. There was one case that showed a person with symptoms and one defective APTX gene and multiple other deficiencies, but I'd think that would be fairly uncommon.

[VydorScope]

Erm there are a few .... but I haven't seen any of them post on this thread.

Most of us (prbly all of us) are guilty of this at one time or another.

[tiredofdoctors]

What do you mean probably all of us???!!! That's a pretty 'inflammatory' statement!!!!!!!

[CarlaB]

What do you mean probably all of us???!!! That's a pretty 'inflammatory' statement!!!!!!!

Poor Vincent, always getting into trouble ....

[Mtndog]

I think this thread startd out with a very good point. There has been too much arguing on the forum. I didn't read the cold thread so I know not of that. I think debate is healthy BUT there have been people coming on the board to incite trouble...research is getting thrown around left and right.

The problem is for every study that says X, there is another one that says Y. All I can speak from is MY personal experience. For example, you (the hypothetical you) may eat Amy's and not have a reaction. I eat it and I do. That doesn't mean NO ONE should eat Amy's. It just means I shouldn't and if someone else suspects they are reacting to it, it may be comforting to know that someone else SUSPECTS they did too.

Even the god of science (I say that playfully) is not absolute (although there are some board members who would claim otherwise). All researchers have their biases and this can affect the outcome.

I think you need to take everyhing on here with a grain of salt (and sometimes a shot of tequila ) and get back to the purpose of the forum which is sharing information, discussing it and being critical about it.

Me? I like peace.

[TriticusToxicum]

I think you need to take everyhing on here with a grain of salt (and sometimes a shot of tequila ) and get back to the purpose of the forum which is sharing information, discussing it and being critical about it.

Me? I like peace.

Bravo!

[Mtndog]

Bravo!

Richard- I only just met you but darn it, I like you!

[VydorScope]

Poor Vincent, always getting into trouble ....

:( see told you noone loves me! :(

[CarlaB]

:( see told you noone loves me! :(

So not true.

I think this thread startd out with a very good point.

For example, you (the hypothetical you) may eat Amy's and not have a reaction. I eat it and I do. That doesn't mean NO ONE should eat Amy's. It just means I shouldn't and if someone else suspects they are reacting to it, it may be comforting to know that someone else SUSPECTS they did too.

I think you need to take everyhing on here with a grain of salt (and sometimes a shot of tequila ) and get back to the purpose of the forum which is sharing information, discussing it and being critical about it.

Excellent points. That's what I'm here for, to find out how everyone else copes. If science and medicine was always absolute, most of us wouldn't have been sick for so long.

[dlp252]

:( see told you noone loves me! :(

Poor misunderstood Victor (ps, I said Victor on purpose Vincent)

[Mtndog]

:( see told you noone loves me! :(

ahhh... but what we love most about you is your ability to insight MASS FITS OF LAUGHING!!!!!!!!!!!!!

[Canadian Karen]

:( see told you noone loves me! :(

No fear, Mullet Man, you have a special place in all of our hearts!

Hugs

Karen

[VydorScope]

No fear, Mullet Man, you have a special place in all of our hearts!

Hugs

Karen

Yea just below the rubbish bin I bet

[jerseyangel]

Come on Victor--snap out of it! You're our bud--you know that

[Mtndog]

Yea just below the rubbish bin I bet

my love and my heart have no rubbish bin SILLY BOY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Nor do karen's, Carla's, Patti's, Lynne's, Rachel's, Donna's, Susan's....... (and anyone else I forgot)

But NEVER forget that if we really new you, we could not be friend's :cuz you're a guy

[tarnalberry]

The problem is for every study that says X, there is another one that says Y. All I can speak from is MY personal experience. For example, you (the hypothetical you) may eat Amy's and not have a reaction. I eat it and I do. That doesn't mean NO ONE should eat Amy's. It just means I shouldn't and if someone else suspects they are reacting to it, it may be comforting to know that someone else SUSPECTS they did too.

I think it's good to have all this information. If I know that a product is supposed to be gluten-free, but people have reacted to it, I'm going to approach it differently than if no one has ever reacted to it, than if I have no information on it. It's all useful information in it's nuances.

[tiredofdoctors]

:( see told you noone loves me! :(

VINCENT!!!!! We ALL love you!!! But, Bev's right -- if we really knew you we couldn't be friends with you, cuz you're a guy.

[CarlaB]

But NEVER forget that if we really new you, we could not be friend's :cuz you're a guy

LOL So true, we'd all be friends with your wife and just plain drive you crazy!