Hi, Everyone. First of all, I want to apologize to all of you for causing such a panic about ALS. I visited and read some of the posts. Let me explain what I am going through and perhaps you will find it in your hearts to understand. My posts were not a scam and yes, it was me who posted on braintalk.org. Here goes.
I started twitching a year ago. Many of you are admitted hypochondriachs and there's nothing wrong with that and many of you have "fessed up" to being hand-wringers and worry-warts. Those traits are what make us all inividuals. I have the good fortune of taking after my mom but alas, I inherited her vericose veins--so you see, we are all different. I've never been a worrier or one who gets "stressed out." Sure, I have stressful moments at work, for instance, but they pass and I move on. I was never one to run off to the doctor unless there is something seriously wrong. I rarely miss work (have over 250+ leave days accrued). I just wanted to illustrate that I know with 100% certainty that none of my symptoms are stress-related.
I have been to four neurologists. Whatever makes them think they can presume to make a psychological assesment of someone in 5 minutes time is beyond me. I have gotten the "stress lectures" and "you are suffering from somatization" talks from everyone of them. I'm sure many of you have experienced this. WE are the ones living inside our bodies and it is up to the doctors to take what we as patients tell them at face value instead of trying to read something else into it--I find this particularly true of women. If I go to the doctor and say I've been twitching or I am having trouble swallowing, I don't want to be questioned like a defense witness by a hungry prosecutor. This is precisely what happened on my last neuro visit. First, I had made some notes to take with me. He saw my notes and yelled at the top of his lungs, "Put those notes away! You don't need those!" I wanted to start from the beginning when I began having the headaches you all read about in my story. He cut me off and said, "No, I want to know what's bothering you RIGHT AT THIS MOMENT." Of course, I told him about the twitching. To make a long story short, he wouldn't let me start at the very beginning so I could illustrate a year-long progression of what I know has culminated into bulbar onset ALS.
As a result of his rude and pompous office manner, I could only fit in here and there some of my symptoms--so, in his report it says something to the effect. . . ."transient symptoms that come and go ....benign....yaddayaddayadda." As far as his psycho-analysis of me, it consisted of "How about your daddy. Was your daddy a good boy? Was your daddy a good boy?" He repeated this over and over until he had me in tears. My wonderful mother and father were sitting in the waiting room worrying about me and this kook of a doctor insinuates that I was sexually abused?! After he saw that he had me in tears, he had the nerve to say, "Those tears tell me all I need to know." He also asked about my job, my family and my financial status. I told him I had a great job and a wonderful family. I had a "pollyanna" upbringing and came from a family where no one raised his/her voice to each other and respected each other. It was wonderful! I said finances were tight for awhile until we got my husband's disability straightened out through his insurance carrier. Well, get this: He said: "I hate my job. I have patients I hate. I have family problems and I have financial problems." I' m thinking, what kind of a nut is this guy? I can just imagine what he wrote in his notes about me and that leads to another problem. When you go to yet another doctor, those notes go with you and you are doomed before the next doctor ever sees you.
I want back to my local neuro who referred me to that quack to plead my case one more time and he said he knew Dr. so and so for 25 years and he respects his diagnosis. We talked briefly, he would not believe me about my swallowing and stood up and looked at the clock so he could get me out of his office.
Anyhow, the swallowing problem is real and now it has affected my jaw muscles. They are so siezed up that my bite is off and the backs of my 2 front teeth are eroding from the bottom teeth hitting them when I chew. It had also moved into my upper chest awhile back and also my diaphragm. Sometimes, breathing is very difficult. That's the order in which it came and after the muscles sieze up, they begin to relax somewhat and that's when the deterioration begins. So far my limbs are ok and the EMGs were normal in the limbs. I did some real esearch on ALS. I don't mean surfing the internet--I mean real research at a university library. (BFSers...you won't have to "wonder" or "question" yourself if you think you have a swallowing problem. Believe me, you will know it if you do.)
That brings me to here. On my final post, I was looking for support and clinging to this site for all it's worth. Someone, I forget who wrote something to the effect that "yes, it's probably somatization." I got so angry and hurt because after hearing it from one doctor after another and then from one of the BFSers who doesn't even know me I just lost it and now you know the rest of the story. That is why I said I had been diagnosed. I really haven't been but I know I have it. It's just that no one will believe me. I'm also a little jealous that I can't belong to your group anymore. Eveyrone here is so wonderful. I wish I could just go back to having BFS. You don't know how lucky you all are.
This is my private hell: As you may have read in my posts, my husband had a nervous breakdown in December so I keep much of this from him. If you know anything at all about medicine, here's what he's on so it will give you some idea of his condition and why I can't lean on him. He's on 150 mg. Effexor per day; .5 Xanax 3 times per day; 30 mg. Remeron per day and 75 mg of Seroquel per day. He's doing ok though now. I haven't told my co-workers because when all this first started I thought it was MS. Well, that made its way through the office and no one came near me. No one joked. Nothing. It was as if I had leprosy. I am keeping my dirty little secret. The only ones I have told are my parents and my best girl friend. Yes, I cry. I cry for 30 miles on the way home from work each day into some of the hundreds of Dairy Queen napkins stuffed in the glove box. I've stopped watching my weight and cholestorol. Who cares? Does it really matter? Is one more Dairy Queen cookie dough blizzard in the grand scheme of things going to make any difference? Does it hurt me to look at my cat and think that more than likely he is going to outlive me? Will I get to try all the new recipes in the new cookbook I ordered from QVC? I took out a long-term care policy on myself but it doesn't kick in until 12/1. I am praying I can make it til then without medical intervention. I have taken out $250,000 in life insurance so I can leave my husband with some security. When he says something like "next year we'll put new carpet in the kitchen" or "when my pick-up is paid off, we'll get a new car", I could just cry. I am driving a Subaru with 268,000 miles on it and it will be the last new car I ever see in my lifetime. I've come to realize that and a lot of other things. Kenny Chesney fans, have you ever listened to his song "A Lot of Things Different"? Do so sometime. It'll really make you stop and take stock of your life and priorities. If 9/11 didn't make you stop sweating the small stuff, having to deal with a fatal illness will, believe me.
We drove to Altoona PA today and went shopping and ate at TGIFriday's. I am savouring every moment of every day. My husband will never be out in the work-a-day world as a tanker driver or truck driver again due to his condition and medication so we went out on a limb and took out a second mortgage on the house. (His Soc Sec Disability was denied twice so we got an attorney but it could take years to appeal and win--if ever.) He is a gifted carpenter so he is building a 32' x 40' workshop and we are filling it with $10,000 worth of Grizzly power tools. He is going to make furniture, cabinets, etc. Our bills total more than my income so he has to do something to generate income for when his disability insurance runs out through his employer.
I hope you all understand this. I posted on braintalk.org hoping that the people who know first-hand about ALS would say something like you absolutely do not have ALS now get out of our forum!
Again, my apologies. I hope you can for give me. With Humble Thanks.
Carolmarie
I started twitching a year ago. Many of you are admitted hypochondriachs and there's nothing wrong with that and many of you have "fessed up" to being hand-wringers and worry-warts. Those traits are what make us all inividuals. I have the good fortune of taking after my mom but alas, I inherited her vericose veins--so you see, we are all different. I've never been a worrier or one who gets "stressed out." Sure, I have stressful moments at work, for instance, but they pass and I move on. I was never one to run off to the doctor unless there is something seriously wrong. I rarely miss work (have over 250+ leave days accrued). I just wanted to illustrate that I know with 100% certainty that none of my symptoms are stress-related.
I have been to four neurologists. Whatever makes them think they can presume to make a psychological assesment of someone in 5 minutes time is beyond me. I have gotten the "stress lectures" and "you are suffering from somatization" talks from everyone of them. I'm sure many of you have experienced this. WE are the ones living inside our bodies and it is up to the doctors to take what we as patients tell them at face value instead of trying to read something else into it--I find this particularly true of women. If I go to the doctor and say I've been twitching or I am having trouble swallowing, I don't want to be questioned like a defense witness by a hungry prosecutor. This is precisely what happened on my last neuro visit. First, I had made some notes to take with me. He saw my notes and yelled at the top of his lungs, "Put those notes away! You don't need those!" I wanted to start from the beginning when I began having the headaches you all read about in my story. He cut me off and said, "No, I want to know what's bothering you RIGHT AT THIS MOMENT." Of course, I told him about the twitching. To make a long story short, he wouldn't let me start at the very beginning so I could illustrate a year-long progression of what I know has culminated into bulbar onset ALS.
As a result of his rude and pompous office manner, I could only fit in here and there some of my symptoms--so, in his report it says something to the effect. . . ."transient symptoms that come and go ....benign....yaddayaddayadda." As far as his psycho-analysis of me, it consisted of "How about your daddy. Was your daddy a good boy? Was your daddy a good boy?" He repeated this over and over until he had me in tears. My wonderful mother and father were sitting in the waiting room worrying about me and this kook of a doctor insinuates that I was sexually abused?! After he saw that he had me in tears, he had the nerve to say, "Those tears tell me all I need to know." He also asked about my job, my family and my financial status. I told him I had a great job and a wonderful family. I had a "pollyanna" upbringing and came from a family where no one raised his/her voice to each other and respected each other. It was wonderful! I said finances were tight for awhile until we got my husband's disability straightened out through his insurance carrier. Well, get this: He said: "I hate my job. I have patients I hate. I have family problems and I have financial problems." I' m thinking, what kind of a nut is this guy? I can just imagine what he wrote in his notes about me and that leads to another problem. When you go to yet another doctor, those notes go with you and you are doomed before the next doctor ever sees you.
I want back to my local neuro who referred me to that quack to plead my case one more time and he said he knew Dr. so and so for 25 years and he respects his diagnosis. We talked briefly, he would not believe me about my swallowing and stood up and looked at the clock so he could get me out of his office.
Anyhow, the swallowing problem is real and now it has affected my jaw muscles. They are so siezed up that my bite is off and the backs of my 2 front teeth are eroding from the bottom teeth hitting them when I chew. It had also moved into my upper chest awhile back and also my diaphragm. Sometimes, breathing is very difficult. That's the order in which it came and after the muscles sieze up, they begin to relax somewhat and that's when the deterioration begins. So far my limbs are ok and the EMGs were normal in the limbs. I did some real esearch on ALS. I don't mean surfing the internet--I mean real research at a university library. (BFSers...you won't have to "wonder" or "question" yourself if you think you have a swallowing problem. Believe me, you will know it if you do.)
That brings me to here. On my final post, I was looking for support and clinging to this site for all it's worth. Someone, I forget who wrote something to the effect that "yes, it's probably somatization." I got so angry and hurt because after hearing it from one doctor after another and then from one of the BFSers who doesn't even know me I just lost it and now you know the rest of the story. That is why I said I had been diagnosed. I really haven't been but I know I have it. It's just that no one will believe me. I'm also a little jealous that I can't belong to your group anymore. Eveyrone here is so wonderful. I wish I could just go back to having BFS. You don't know how lucky you all are.
This is my private hell: As you may have read in my posts, my husband had a nervous breakdown in December so I keep much of this from him. If you know anything at all about medicine, here's what he's on so it will give you some idea of his condition and why I can't lean on him. He's on 150 mg. Effexor per day; .5 Xanax 3 times per day; 30 mg. Remeron per day and 75 mg of Seroquel per day. He's doing ok though now. I haven't told my co-workers because when all this first started I thought it was MS. Well, that made its way through the office and no one came near me. No one joked. Nothing. It was as if I had leprosy. I am keeping my dirty little secret. The only ones I have told are my parents and my best girl friend. Yes, I cry. I cry for 30 miles on the way home from work each day into some of the hundreds of Dairy Queen napkins stuffed in the glove box. I've stopped watching my weight and cholestorol. Who cares? Does it really matter? Is one more Dairy Queen cookie dough blizzard in the grand scheme of things going to make any difference? Does it hurt me to look at my cat and think that more than likely he is going to outlive me? Will I get to try all the new recipes in the new cookbook I ordered from QVC? I took out a long-term care policy on myself but it doesn't kick in until 12/1. I am praying I can make it til then without medical intervention. I have taken out $250,000 in life insurance so I can leave my husband with some security. When he says something like "next year we'll put new carpet in the kitchen" or "when my pick-up is paid off, we'll get a new car", I could just cry. I am driving a Subaru with 268,000 miles on it and it will be the last new car I ever see in my lifetime. I've come to realize that and a lot of other things. Kenny Chesney fans, have you ever listened to his song "A Lot of Things Different"? Do so sometime. It'll really make you stop and take stock of your life and priorities. If 9/11 didn't make you stop sweating the small stuff, having to deal with a fatal illness will, believe me.
We drove to Altoona PA today and went shopping and ate at TGIFriday's. I am savouring every moment of every day. My husband will never be out in the work-a-day world as a tanker driver or truck driver again due to his condition and medication so we went out on a limb and took out a second mortgage on the house. (His Soc Sec Disability was denied twice so we got an attorney but it could take years to appeal and win--if ever.) He is a gifted carpenter so he is building a 32' x 40' workshop and we are filling it with $10,000 worth of Grizzly power tools. He is going to make furniture, cabinets, etc. Our bills total more than my income so he has to do something to generate income for when his disability insurance runs out through his employer.
I hope you all understand this. I posted on braintalk.org hoping that the people who know first-hand about ALS would say something like you absolutely do not have ALS now get out of our forum!
Again, my apologies. I hope you can for give me. With Humble Thanks.
Carolmarie