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wheeler641

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Just wanted to take a few moments to say thanks to everyone who has responded to my posts and are helping me through this. When I first posted on this forum, I like so many others was terrified that I might have als. Thanks to the support of all of you I am no longer fearful 24 hours a day. I am still undiagnosed and as I sit here typing this, I am twtching like crazy. I have learned so much from all of you about als and compassion. This is the most compassionate forum I have ever been a part of. I have learned that a diagnosis of ALS is not always a death sentence. Tomorrow is not promised to anyone and there are a lot of other things out there that can get you quicker. My dad like me spent over a year looking for diagnosed of his symptoms, by the time he got an answer it was too late. he got jaundice and after a year of running back to doctor after doctor, he was finally diagnosed with cancer of the colon that had spread to his liver, he died within 2 weeks after being diagnosed, I keep asking myself why he could not get an answer sooner, were the doctors he saw so inept they just missed all the symptoms? That is one more reason I am searching for a diagnosis before it is too late. I want to thanks al the members of the forum, Al for letting me stay here for awhile, Rose you have went above and beyond helping me, Beth you are brave compassionate person with a great sense of humor, also brendapals, you have amazing strength and also planninguy, zaphoon(whose symptoms are similiar to mine) Awielba, lydia and all the pals and cals( hope I did not miss anyone} Once I am diagnosed, I would like a way to somehow give back for the help you guys have given me and to raise awareness about als. I live in indiana close to Illinois, if someone in that area needs assistance in anyway I would be happy to help with transportation or anything else. Well this is getting long, again just wanted to say thanks and god bless, margaret
 

lydia

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You are very sweet Margaret :)

That is awful about your father. I had something similar with my mother. There is no way it can not color how you view the medical profession. Even though reason tells us they can't all be that way...I grimace every time I hear advice given here and elsewhere to "trust" your physician and his conclusions/interpretations. I am sorry but you don't just "trust" someone just because of their education and title. There are a lot of fools out there and the medical profession is not exempt. Keep looking Margaret!

Lydia
 

Zaphoon

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Margaret,

Your father's story sure brings a lot into the picture; thank you for sharing that! It sort of brings home your eagerness to put some definition on your symptoms. Here's hoping for a diagnosis in the very near future!

I'm pulling for you!

Zaphoon
 

brendapals

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margaret,
You're just a doll-hang out on here with us as much as you'd like. We'll try to help you any way we can!
take good care,
hugs
-b
 

BethU

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Lydia ... I am struck by your observation about "trusting" doctors and their conclusions, because you are so right. Yet I am one who tells people to trust their doctors ... despite the mis-diagnoses I got on the way to the right one (ALS). And other even scarier episodes I've had, if it's possible to get scarier than ALS (and it is). I am now on my 9th neurologist, so I did not take this lying down :) !

Nevertheless ... I read so many messages here from people who simply dismiss their doctors' evaluations and test results as if they were getting advice from their grocer. Those degrees on the wall represent years of training. The doctor may be a fool, but he's an educated one, and to disregard his/her findings in favor of opinions from strangers with no medical training is to be an even bigger fool. No matter how many neighbors and friends may agree with your theories about your symptoms, you'll get nowhere in solving the puzzle until a doctor agrees with you. And a doctor is not going to agree with you unless his examination of you and test results support his opinion.

I keep feeling that the reason so many people seem to "want" ALS ... actually, DEMAND that the world agrees with them that they have ALS is a) because they want an answer, even if it's a bad one, and b) they know so little about medicine that they have no idea how complex medicine is, and how many dozens or hundreds of other possibilities there are. Plus, c) of course, underlying anxiety.

So, I agree with you that many doctors are fools, but I haven't met any that are liars ... and I still hope people will listen to what their doctors tell them .... especially those who have Googled themselves into the belief that they have ALS and are sitting around scaring themselves to death.

Take care.
 

ktmj

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The human body is amazingly complex, and it is not just neurological issues that people have issues in determining the correct diagnosis (contrary to what we see on my favorite show "House").

My assistant's mother had non-Hodgkins lymphona, and she knew something was not right for several months before she was diagnosed and sent to a specialty cancer clinic in our state. Doctor after doctor told her it was older age, blah blah, but she knew different. It's only after the docs can put the puzzle pieces together, or a certain test comes back positive, or the disease presents itself fully, that they can make the correct call.

There are some incompetent dummies out there, just like every profession, but for the most part they are trying to help based on the parts of the puzzle they are presented.

If we were not so complex, we would already have a cure for everything, including the one that is afflicting our neuro systems. Fortunately we have found a solution for many of our human ailments, but when we can't find a cure for the common cold it should tip us off that about 90% of what can go wrong is beyond our human limitations.

I am as frustrated as most undiagnosed'ed here, and those that went a long time before diagnosed, but the truth is it has to be staring them in the face sometimes.

Dang, I just read over all this rambling and it is a little depressing. Sorry folks - just went on a rant I could not control.:roll: I guess we have to keep everything in perspective - these docs are going to succumb to something one day too, though I hate that us or even them have to contemplate that.
 

olly

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hi margaret,what a sweet post.
i really hope you do find answers and a diagnosed soon.

i went 8yrs with umn symptoms and un-diagnosed'ed as they were too busy repeat testing for other things,then diagnosed'ed over a year ago with mnd after developing lmn involvement.
i know some on a pls forum who went 10-15yrs before diagnosed.

my neuro says the brain is like a locked up room,they can not always see in or have the right key to open the door.
neurology though it has come along way in the last century is still in its infancy,there is so much they dont know or can explain.

on the subject of incompitant doctors i have many many stories of this happening.
one of my own is i had cervical cancer aged 23yrs,i went to the doctors for 8mths with pelvic pain but told it was hormonal or bowel problems.
then 2 smear tests and a biopsy showing tumors i was in surgery within a week having laser surgery to cut the tumors away.
7yrs of 6monthly smear tests and hormonal treatment later that resulted in a blood clot in my right leg i had to have a hysterectomy.

my aunt bless her has a few months left,she has been ill for over a year but they botched up tests and other things.
they finally found before christmas she has lung cancer that has spread to her brain and she is now having seizures.
they can not do anything but agreed to let her have chemo as it may give her a few extra wks/mths.
cancer is a big problem on my mums side of the family.

i have said this before,YOU KNOW WHEN SOMETHING IS REALLY WRONG.
you have to be honest and true to yourself and sometimes think "am i really that bad?", "do i really have something to worry about?"
i asked myself these questions early on in my illness when they kept saying my tests were normal,i knew deep down things were not right.
my sis is a hypochondriac and will moan about any little ache or pain and go to bed.
this really annoys me as i never ,even if i am in agony with spasms or too weak to move complain or say anything.

i really feel for everyone with no diagnosed,especially when its been a long time.
but if theres something wrong they will find it eventually.
i think if you are taken seriously and believed that is half the battle as they will give help and meds till they find the answer.
 

rose

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Margaret....

What a thoughtful post!

Your offer of transportation help in your area I'm certain is one that is needed. To make a specific statement like this, shows how genuine your feelings are.

My dad died suddenly, and even though he was sick with something else, and it was expected that he would not live for many more years, no one thought he'd just fall over in the front yard. Even though these aren't the same circumstances, I understand about the suddenness.

You show much insight as well as give us a feeling for where you're "coming from". Every single person who has responded to this, has also had something of value to add.

Beth, how you worded that is a gem, it sums it up so well. I agree, you've got to go into that appointment with the doctor, in a mind set that this person will actually know more than you do about what to look for, or the copay for the office visit could be put to much better use!

Even though most people "just know" when something is off in their body, I also think there seems to be a social stigma attached if the problem is brought on by something other than a physical cause. Being told that they are anxious is not what they want to hear, because they equate anxious with meaning insignificant, or "choosing" to have the problems they are feeling. This of course is not true, but I still believe it is a hurdle, and many would rather be told (they think at the time) that they are dying, rather than their symptoms not stemming from a tangible, physical source.

Also, every single symptom does not have to be related, you don't have to connect all the dots. Think about how many people get killed each year in car accidents, and of those, some would have died soon anyway because they had an illness at the time they were in the crash. We can have more than one thing wrong at a time, a few of us here are excellent examples of this ~ not wanting to name names :wink:

I think too, that even though many are desperate for diagnosis, that when they get one, this does not equal "closure". The first thing they probably will do is wonder if the doctor could be wrong, especially if they have anything other than a classical presentation of a condition or disease. I wonder every single day if something is being missed in my situation, and I know I'm not alone.

So, Margaret, you're a sweetheart, and that is that!
 
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