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Hi Conrad - I know it is so frustrating. I have had days where I didn't want to go too far from the phone and then never received the call. Sometimes the docs seem so cold. But be patient, you never know what came up with them--maybe there was an emergency or he didn't get his messages, or maybe the doc knows your okay and isn't in a rush. Let's hope that is the case. Good luck. Leslie
patricia1
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hi conrad You have to call the office and ask for the office manager be forceful Tell them you need a answer and you are not taking no for a answer.I worked in a doctors office for 30 years and alot of the time the doctor doesnt get the message. Good Luck Pat
vantec
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Hi Leslie,
I called twice yesterday, and told the secretary how important it was that the doctor call me. To my surprise, he called around 5:00pm. He said that my EMG showed an abnormality, but that he could not diagnosed me with ALS yet, and told me to come back in three months. Then I told him about my breathing problems, and he said that I should set up an appointment for a pulmonary function test. I'm going to do that today. When I lay in bed, it is difficult to breath, and I can't take deep breaths anymore. I sure hope I don't have Bulbar ALS.
Conrad
I called twice yesterday, and told the secretary how important it was that the doctor call me. To my surprise, he called around 5:00pm. He said that my EMG showed an abnormality, but that he could not diagnosed me with ALS yet, and told me to come back in three months. Then I told him about my breathing problems, and he said that I should set up an appointment for a pulmonary function test. I'm going to do that today. When I lay in bed, it is difficult to breath, and I can't take deep breaths anymore. I sure hope I don't have Bulbar ALS.
Conrad
vantec
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Hi Pat,
You're right, being forceful on my second call, I'm sure, is the reason the doctor called me. I can't understand why they treat people that can or do have life threatening diseases so poorly.
Conrad
You're right, being forceful on my second call, I'm sure, is the reason the doctor called me. I can't understand why they treat people that can or do have life threatening diseases so poorly.
Conrad
hello conrad - i completely understand
hello conrad and so many others that have posted on this thread with conrad. first of all, i understand your anxiety. it took three neurologiets, three emg tests, a pulmonary specialist, an ent specialist, and finally an als specialist at vanderbilt als clinic in nashville, tn. before my husband was finally diagnosed with als.
we lived in fear and anxiety for almost a year because these people would not give us a diagnosed, and we had researched his symptoms on the internet a year ago and pretty much knew it was als. most of the doctors went out of their way to tell us it was a 'terminal disease with no treatment and no cure.' boy - we really needed to hear that one.....
and as far as the people in the office - you are all right about that one. they do not hae a clue what als is all about, and no one has bothered to educate them on it. if they knew what a monster this disease is, they might have some empathy for us. but, as one of you said, they just want those forms filled out correctly and their money.
we had so much fear and anxiety, especially me, the caretaker, that i thought i'd have a nervous breakdown before he was finally diagnosed. now that we know what it is, most of the anxiety has turned into heartache. it breaks my heart to see him go through all this, not being able to even mow the yard, button his shirt, be intimate, and just downright lose all dignity in having to lean on others for the smallest things.
this forum is an absolute lifesaver for me, and i want you all to know how much you all mean to me.
hugs, jackiemax
hello conrad and so many others that have posted on this thread with conrad. first of all, i understand your anxiety. it took three neurologiets, three emg tests, a pulmonary specialist, an ent specialist, and finally an als specialist at vanderbilt als clinic in nashville, tn. before my husband was finally diagnosed with als.
we lived in fear and anxiety for almost a year because these people would not give us a diagnosed, and we had researched his symptoms on the internet a year ago and pretty much knew it was als. most of the doctors went out of their way to tell us it was a 'terminal disease with no treatment and no cure.' boy - we really needed to hear that one.....
and as far as the people in the office - you are all right about that one. they do not hae a clue what als is all about, and no one has bothered to educate them on it. if they knew what a monster this disease is, they might have some empathy for us. but, as one of you said, they just want those forms filled out correctly and their money.
we had so much fear and anxiety, especially me, the caretaker, that i thought i'd have a nervous breakdown before he was finally diagnosed. now that we know what it is, most of the anxiety has turned into heartache. it breaks my heart to see him go through all this, not being able to even mow the yard, button his shirt, be intimate, and just downright lose all dignity in having to lean on others for the smallest things.
this forum is an absolute lifesaver for me, and i want you all to know how much you all mean to me.
hugs, jackiemax
CindyM
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Hi Jackie-I can't decide which road is the harder to travel with this disease. It must be awful watching the one you love and even more anxiety-producing to be responsible for his care. But then again there's the poor PAL. THank goodness we all have each other! Cindy
vantec
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Hi Cindy,
Yes, my appointment for the pulmonary test is on May 3rd, at 10:00am. I've never had one before, and I was wondering how it is done. Do they hook up a mask to your face, or do you just blow into a device?
Conrad
Yes, my appointment for the pulmonary test is on May 3rd, at 10:00am. I've never had one before, and I was wondering how it is done. Do they hook up a mask to your face, or do you just blow into a device?
Conrad
quadbliss
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Hi jackiemax,
I wanted to share something with you and your husband that I have learned through years of living with this disease.
I am not my body. I am my presence or spirit. I am paralyzed from the neck down, need help with the most basic bodily functions, and can't speak. In spite of this, I have not lost one ounce of my dignity. No one can take that away from you. You have to surrender it. I have pride in who I have become, and exist with an ere of confidence.
Mike
I wanted to share something with you and your husband that I have learned through years of living with this disease.
I am not my body. I am my presence or spirit. I am paralyzed from the neck down, need help with the most basic bodily functions, and can't speak. In spite of this, I have not lost one ounce of my dignity. No one can take that away from you. You have to surrender it. I have pride in who I have become, and exist with an ere of confidence.
Mike
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patricia1
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Hi Conrad I had a mask because I have weakness around my lips But if you dont you take a deep breath and blow into a tube attached to the machine after you blow all the air into the tube you suck in while the tube is still in your mouth Then they make you do that three times an take the best reading of the three. Then you have to put the tube in you mouth and breath in and out quick breaths ,and thats the test They may do it while your lying down too good luck Patvantec said:
thank you quadbliss
after i read your post about still having your dignity, and my husband can still do so many more things than you, i felt ashamed that i wrote what i did about dignity. you are a true example to all of us, especially me, what dignity is all about.
God bless .
jackiemax
after i read your post about still having your dignity, and my husband can still do so many more things than you, i felt ashamed that i wrote what i did about dignity. you are a true example to all of us, especially me, what dignity is all about.
God bless .
jackiemax
Jackiemax - please don't feel ashamed. Mike and others have taught me many things, which have made my life, with this unknown illness, much easier to bear. After all I have been through in my life, it took the members of this forum to make me realize that I can still love my life and all that I have. Some say that everything happens for a reason, maybe these are the reasons for all of us. Enjoy your day! Leslie
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