Old 09-26-2008, 09:53 AM #46 (permalink)
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This is the first time I've waded down through all of this thread..... here are some thoughts...

Re: House (LOL) that show tends to make me crazy. Just because IN AN HOUR this show can diagnose the patient where as I was in Limboland for so long. ~ For at least a year, my docs were saying "autoimmune" to me, and then if I flipped on House, they were always throwing that term around! My friends and family were telling me that "my" case was going to end up as an episode on House or Medical Mysteries one day, and I'd reply, (none of this is serious conversation, by the way) I'd say not House, because my symptoms didn't happen rapidly enough, but I might have a shot at Medical Mysteries It is entertaining and it does certainly bring to the forefront public awareness of all of the sick people out there that don't have "text book" symptoms of anything. I swore off watching it for a while but have slipped back into it, although I missed the season premiere.

Re: Al.... this man's wisdom is a Godsend. His style with dealing with people and situations is consistent. Not only is he well educated in what MND is, but I feel he shows good judgment in applying that knowledge to how people on here present themselves, not just with what their symptoms are, but how they are coping with their own situation emotionally.... and for those that have something wrong, but aren't finding solace or useful information to help themselves cope, but rather the exact opposite ~ scaring themselves silly, and acquiring new symptoms for themselves the more they read what has been posted ~ these people I've noticed that he does his best to steer away from the very thought of ALS. It is absolutely in that scared person's best interest that he do that. I'll bet that if this were a purely social forum, Al would be there encouraging everyone to stay around, and enjoy the fun... have a glass of something nice.... heard any good jokes lately?.... let me show you the pictures of the grandkids....

I, like probably virtually everyone on here, read on the forum for a long time before I ever posted. Well, long is a relative term ~ I read for a few weeks after joining before posting. Anyway, I remember so clearly when I hit that "submit reply" button the first time, really hoping that Al would respond (I'd given my medical history) and he would basically tell me that it didn't sound anything like MND, and to go outside and play, little girl LOL .... Hey Al, I'm still waiting for that, by the way

Next point.... Wright is basically volunteering his time on this forum, and his ability to decipher medical jargon and test results has been a real personal blessing for me. And, as he teaches full time, it isn't as though he has hours to spend with us, and he definitely shouldn't be expected to remember the particulars of each of our histories.

Last point.... I echo the other sentiments that the mindset is key. That isn't to say its anything other than completely human to want to feel sorry for ourselves, to have "a moment" - but regardless of what the illness or situation is, wallowing in despair will get no one no where ever. period. I hope you get some answers, you obviously have something wrong, but let your doctors ability to understand what test results and symptoms mean be what guides you, not research on the internet. If you find information on the internet that you think is pertinent to your situation, then bring it up with your doctors, if it raises a possibility in their mind when you call it to their attention, they're not going to purposefully ignore it. If you have discussed it with your doctor(s) and they say no way, you don't fit the parameters, then that is what you need to focus on. and yeah, the unknown is unbelievably hard, and people at large - family, friends, co workers, they don't get it. They don't see why its taking you so long to find out what is wrong with you (because when they watch House he gets it solved in an hour) . Best of luck to you, keep your chin up and think about how you're going to win the fight. winning is good.
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Old 09-26-2008, 01:02 PM #47 (permalink)
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Default I thought this section was...

DO I have ALS? Is this ALS?

This section was created for people who were in undiagnosed land. I guess we cant even have our own section anymore because we cry too much.

Awielba Thanks for you understanding.

Crystall, my wife is due on March 16.
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Old 09-26-2008, 01:35 PM #48 (permalink)
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See Lou, that's exactly what I'm talking about. You're crying again about your section. Stand up like a man, say somethings wrong with me, Wait it out like hundreds of others here until something finally shows up on a test that will tell you what you've got. See more doctors if you have too but quit trying to get a diagnosis here. You don't listen to people that try to help you anyway. That's all I'm trying to do. Believe it or not.

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Old 09-26-2008, 01:37 PM #49 (permalink)
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Quote:
Originally Posted by lhagsjr View Post
DO I have ALS? Is this ALS?

This section was created for people who were in undiagnosed land. I guess we cant even have our own section anymore because we cry too much.

Awielba Thanks for you understanding.

Crystall, my wife is due on March 16.
I don't see a problem with encouraging a person with the reassurance that even through there is something wrong with them, the signs don't point to an untreatable, incurable disease.

I have learned over the years to listen more, and say less, so I hope I didn't offend you personally. But, on the other hand, I just don't see how it is in your best interest, or anyone's, to agree that you must have ALS and your wife is going to be widowed, your child fatherless. What purpose does that serve?

We can always look and find someone with worse situations or better too. I'm sitting here, just given the news that my younger son, that I love so dearly, is very likely going to be deployed for a THIRD TIME to the middle east. What role do you think my mindset and determination will play in handling that. For that matter, how do you think his mindset will affect this news? He turned 30 the end of July.

What if you delay a diagnosis, and treatment, because you remain hung up on a disease that your test results and symptoms don't point to? Be open to what your medical caregivers are telling you. good luck
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Old 09-26-2008, 01:39 PM #50 (permalink)
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Quote:
My friends and family were telling me that "my" case was going to end up as an episode on House or Medical Mysteries one day
My doctor says when they finally figure out what is wrong with me, they will call it the CindyM syndrome. Actually there are other things I'd rather be famous for. I like to write, but nobody is offering to publish anything. And I practice the piano daily but nobody ever asks me to play something...Humm.

Lou- I finally figured out that, for those of us impatient with you, we might be responding to your way of asking for support. You began this thread discussing how ill you feel but the docs "won't" (sorry for the paraphrase) give you a DX.

So let me try to understand what it is that you wish. Are you asking for help in getting your doctors to believe you?
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Old 09-26-2008, 01:42 PM #51 (permalink)
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It you want to wallow in self pity you are going to seriously shorten your life. I understand it is frustrating not getting a diagnosis but feeling sorry for yourself will not help or solve anything. Try to find some joy in your life and be happy. You will drive everyone away with the attitude you are protraying here and I would hate to see that happen.
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Old 09-26-2008, 01:49 PM #52 (permalink)
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Default Cindy

Im scared to respond and answer your question because anything I write right now is getting criticized and I'm getting blasted even though i thought this section was created for people in my position.

I guess it makes people feel better about themselves to bully people around.

Its OK, Ill private message a few people on here who are nice/caring people who will listen and give thoughtful insight.

The moderators have been successful in pushing another person off the board.

Congrats
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Old 09-26-2008, 01:59 PM #53 (permalink)
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Sorry, Lou. Threatening to leave is negative and unproductive.

My question is honest, though. I truly believe we are frustrated with your unique way of asking for support. I know I was, until I realized you probably do not mean to appear unwilling to listen to your doctors and others who assure you that you are OK.

Going back and reading your post, I think you may be asking how to get a DX. I am not sure if re-framing your question will get you any better answers, or just different ones, but it might be worth a try. JMO. Cindy
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Old 09-26-2008, 02:01 PM #54 (permalink)
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Default Mindset is key

Lou,

I know how frustrated you are brother.

I just have to tell you....i still got WHATEVER i had...it's somewhat plateaued, maybe a little worse off?

My hands are stiff and hurt, my tongue twitches, my jaw pops at every breath and all the other crap that seems like ALS.

I was sure i had ALS......

I got one of the best doctors anyone could ask for. He's a psych and he has saved my life. Today, i'm living, not dying. Living... That's what we want you to do.

Man, congrats, you ahve a kid...what a wonderful experience...you will experience just as we do. Your attitude contributes at least 75% of how you feel.....so...bad attitude...bad feeling. I lived it, i know.

I have something...it may be ALS...and then again, i may be crazy.

Lou, all i know brother, is i'm better.......not physically....mentally. I'm living....my doctor was right on....he told me long ago, the mind is a strong tool and it can make you or break you...!

Well Lou....you know i'm a straight shooter...so, i'm gonig to tell you, you need to be talking to a good psych, someone who belives you are sick, just as mine does, but someone who also believes that he can help heal you just a little..... just enought to be able to enjoy life again.

It doesn't have to be all dark and grim. We get to wake up, we're living....that in itself my friend, at least for me is a miracle. I was supposed to die last year...i even was writing my own uluogy....poor Jamie..huh...it was all poor me.

....we're luckier than most.... Enjoy your time Lou, your mind and attitude is geetting to you, you have to get help to snap out of it.

Rgds,

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Old 09-26-2008, 02:05 PM #55 (permalink)
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Jamie- if you are crazy then a lot of us are, too! LOL, I don't even want to go there. You are right that counseling helps us see the good parts of our lives. I am glad you found yours! Blessings, Cindy
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Old 09-26-2008, 02:11 PM #56 (permalink)
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Default lou

i totally understood what you wrote in some of your posts and have tried to be supportive along with others.
you have totally missed the main points everyone has said.
you are not the first and definatly wont be the last person to go through what you are dealing with.
no one is saying you are not ill,can,t ask questions or get advice.
but if someone says something you don,t want to hear you go straight into defensive mode.
everyone here has other problems to deal with besides there illness,like rose and her son,me and my dad who has possible alziemers and a brain cyst.
please dont leave but just try to be patient and understanding of others,as we have tried to be with you.
please take good care.
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Old 09-26-2008, 02:16 PM #57 (permalink)
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Can't stand anyone critising you Lou? You're leaving? Guess you just proved my point. Guess I'm picking on you because I'm a bully. I've been bullying here for almost 5 years. Yea it's fun. Guys like you always have to blame somebody else. My doctor won't believe me, my family won't believe me , AL and Wright won't believe me. Who will believe me? Oh woe is me. Something's wrong with me. Someone please help me! I'm so sad. You won't listen at all will you. Four good decent people have tried to give you advice, good advice. What do you focus on? Whining about me bullying you. Grow up. Get some cujones and live a life while you still have one.

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Old 09-26-2008, 02:27 PM #58 (permalink)
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Al- I pm'd Lou last night and advised him he might need to take a break. At post 56 (many of them mine, LOL) this thread is becoming one more instance of how much energy everybody is spending trying to solve a problem that, upon reflection, either can't be solved or the owner of it does not really want to hear the advice offered.

We have to become more efficient, as a group, at re-directing these sorts of endless complaints!
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Old 09-26-2008, 02:56 PM #59 (permalink)
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Yes. I've wasted a lot of time this week trying to make someone listen who doesn't really want to. I'm done.

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Old 09-26-2008, 03:11 PM #60 (permalink)
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Hey AL- I think I finally moved on, thank goodness.

I've been sitting here trying to think of reasons why I can leave early from my day job so I can go pick up the littlest grandson. It is really raining hard down here. Think that is a good enough reason to bug outta here?

So I am off to get Daniel. I may not catch up with everybody until sometime tomorrow. His Mom works late Fridays and early Saturdays and Daddy is away in the service. Great quality time for us, though!
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