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lhagsjr

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Listen, as many of you know Im going through a terrible time just like all of you are. I basically have 3 main symptoms: 1.) Twitching(which waxes and wanes) 2.) Atrophy 3.) Shoulders clicking and popping. I have no answers.

Let me say this though, I see a lot of people on here complaining about the docs. Im sorry but I dont believe they are bad people. If you can still walk, talk, breath OK, and your EMG/biopsy are not suggestive of ALS what do you want them to do, just blurt out ALS? They have certain criteria they must follow in order to diagnose ALS. Some things in medicine are still, even in 2007, unsolvable and unanswered. Why do you want to be diagnosed with ALS so quickly? They cant do anything to help you at that point anyway. In addition, I have been on the board for 4 months and see a lot of people being told NO ALS, and I have yet to see someone come back after a original diagnosis of NO ALS and say they how have been diagnosed with it.

Listen, we are all extremely frustrated but Drs are just people too. They can only run the tests and interpret them. Sometimes I think we think they are more then human.
 

CindyM

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Hi Lou- maybe it depends upon the qualities people are looking for in a doc. I look for experience, recommendations from others in the medical field, and a philosophy of non-intervention whever possible.

How about you? Cindy
 

lhagsjr

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Im looking for a Dr...

who knows what they are talking about and thats the bottom line to me. Most of these people have ALS docs, the best in the WORLD. And they are writing things like, "they have no idea what they are doing, etc. ". Like I said, they have specific guidelines in order to diagnosed ALS...


Just give them a little bit of a break, most of these ALS doctors are ALS docs because they have compassion. You didnt really address any of my points which I think are good ones....
 

Jamiet

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Lou,

while your analogy is correct, i am frustrated they blame all of this on anxiety. When they blame it on anxiety, it seems that their level of understanding and trust into what the patient says, goes out the door, hence, we're not taken seriously. I went so far as both EMG neuros telling me somehting was wrong, only to have the main one dismiss both EMG's as anxiety. To me, anxiety may cause some type of insertional activity, but not NCV afterdischarges and other issues for the EMG specalist to say it was abnormal.

Some of the drs. i visited were some of the nicest people i've worked with and hat's off to them for helping the unfortunate.
 

hboyajian

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Lhagsir, I agree with your basic premise that ALS specialists generally know what tests to administer to rule out other illnesses and what specific matrix of symptoms to look for to finally diagnose ALS according to the current guidelines. I also agree that there are many questions and unknowns that nobody, no matter how well trained and how much experience they have can answer completely. I do think, however, that some doctors could exhibit more sensitivity when dealing with people who are suffering in one way or another. The medical profession is as responsible as the public for setting up the appearance that they are super-human and perhaps know more than they do. Most sincerely want to know how to help people, and I am sure it is frustrating when it is not possible. We want them to have the answers, as it is comforting to believe that someone has the knowledge necessary to cure most illnesses. Unfortunately, this is not the case in every instance.

With ALS, it is critical to have an experienced diagnostician who has dealt with this spectrum of illnesses, or better yet a team. My dad was told by one neurologist that "there is no neurological involvement" a year before another 2 doctors (a physiatrist and an ALS specialist) finally diagnosied ALS. The man did not specifically say, NO ALS, but my family did not even know to ask about such a possibility. I had assumed the first neurologist simply had little experitence with ALS, but I did see him later, and he told me that in fact he had several patients with ALS. He is known in my family as the guy who missed it. My dad definitely had pretty advanced symptoms by the time he arrived in the man's office.
 

CindyM

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Lou- I was addressing it in my own meandering way.:) I was thinking that if you look for a doc who knows what they are talking about then you won't be dissappointed by going to a top-notch clinic where they see neuromuscular stuff all the time. Somebody looking for bedside manners might feel let down if the doc lacked in people skills.

I've been mis-diagnosis a couple of times in my life, but like you I figure these guys are human and doing the best they can and have more training BUT I live in my body. Back before they had sleep labs and knew about apnea I was told that I was depressed. (!) Yep. Me. But I knew nothing about apnea and there was no internet so I just muddled along. Then they invented sleep labs for the rest of us and bingo. CPAP and I'm perking along all day.

Holly- I agree compassion is an important ingredient. If your Dad had been DX'd sooner the results would still be the same :cry: but he might have been eligible for loaner equipment sooner, or maybe some services that would have made life easier.

At the end of the day our docs are a partner in our care. We are lucky of we have the insurance or live in an area where we get choices. Cindy
 

Lorie

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ALS DX is Not so Simple

We also know, from everybody's experience. ALS is hard to DX until a certain point. I think people just get frustrated because they have this awkward hard to deal with symptoms that cannot be explained, just yet. Tim was frustrated for seven years, he had no clue it was ALS. Doctor after Doctor after Doctor. They just don't know until they sufficient reason and test results to DX ALS. We expect them to be God's sometime.
They can only do what they can do. But I must say. There are Doctor's I prefer and the ones I don't that Tim or I will not go back to. This is our "Life". Even after the Doctor's we have to look out for ourselves. What can really be done anyway? If it is ALS. Go the course. Do what you have to do with each step. Try to be Positive and live each moment as Lively as possible. No one is Guaranteed Tomorrow, even people that don't have ALS.

Annmarie, Why hasn't your Doc. refered you to a Neuro.?

Lorie
 

CindyM

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No one is Guaranteed Tomorrow, even people that don't have ALS.

Thanks, Lorie. You said in a few words what I take paragraphs to try to say. Cindy
 

Jamiet

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Annmarie,

You don't need a referral, please call the nearest ALS clinic and schedule you an appt.

Aren't you close to Hershey? If not, look on the MDA's website, they have the ALS clinics listed on there.

do it for me bud!

Cindy, we won't hold it against you........hell, i can't rub my head and my belly at the same time.....lol.....lolololol....have you guys ever tried that....lol. Try rubbing the top of your head with one hand and your belly simutaneously with the other hand at the same time.......as if what we got (whatever the hell it is) doesn't make you uncooridanted enough..lol

Take care,

Jamie
 

Jamiet

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Sheesh, i couldn't be better, i mean, pectoral cramps, my feet hurt and my ankle / calf feel like someone has put a noose on it and cutting the circulation off.


it could be worse thought, it could be so bad that i couldn't even rub my head and belly, so i won't complain.
 

ltr

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All I got to say about this thread is......remember my neuro who grabbed his belly fat, jumped around the room and said "we all change"! Case closed! And don't they take some kind of code about helping people?
 

qualitybabe823

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Talking about doctors?

I agree for the most part that we expect allot from our doctors. The only thing that gets me is when they refuse to refer you to somone WHO CAN HELP. This is when the respect is lost. We generally are in tune with our bodies, and we know when something is wrong. In my situation, given my history, and all of my symptoms, my doctor stated that we need not think about WHY. Just work to fight it with exercise. He is only a general practitioner. I want a referral to someone who can thoroughly check me out. No, I do not want a diagnosis of ALS, I watched my father die of it and it is definitely not something I want to have to put my family through, but at the same time, if this is my fate, I have a right to know for sure. I am in a limbo right now. My body is slowly deteriating, yet at my job and in my life I am expected to be the same I have always been.......work as physically hard as I always have and when I cannot peform, people look down on me, as if I am just getting lazy. WITHOUT a diagnosis, people do not take you seriously. That's the hardest part, I am the type of person that will beat up on myself, I don't need someone to tell me if I am doing wrong, and because I have no medical explanation for what is happening to me, I feel that people look at me as if I am giving up. It's hard to explain, at least if I had SOME answer as to what is happening, then I have an explanation for why I can't do this or that or why I can't walk or stand for long stretches of time or why I can't type on a pc for more than a couple of minutes without my hands tiring.

If a doctor does not know, he should be honest about it, and refer you to someone who can help you instead of adding to the limbo that you live on a daily basis.
 

ltr

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qualitybabe823 said:
My body is slowly deteriating, yet at my job and in my life I am expected to be the same I have always been.......work as physically hard as I always have and when I cannot peform, people look down on me, as if I am just getting lazy. WITHOUT a diagnosis, people do not take you seriously. That's the hardest part, I am the type of person that will beat up on myself, I don't need someone to tell me if I am doing wrong, and because I have no medical explanation for what is happening to me, I feel that people look at me as if I am giving up. It's hard to explain, at least if I had SOME answer as to what is happening, then I have an explanation for why I can't do this or that or why I can't walk or stand for long stretches of time or why I can't type on a pc for more than a couple of minutes without my hands tiring.

I completely agree with you. We look the same, so family, friends, neighbors, strangers don't think we are sick, just lazy, or not trying hard enough. Many don't understand some of us who need to know what is going on, and need everyone else around us to know as well.
 

Jamiet

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When i asked my first neuro for a referral to a "houston" doctor...he told me......that would be like a slap in his face.......i almost slapped him for real.
 
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