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Guest
Guest
Ive been pondering if I should be tested for ALS or not. The problem is I dont trust doctors and have avoided going to one for the last 6 years. Here's my story.
9 years ago after more then a year of going to the doctors with complaints of muscle soreness and fatigue I was finally diagnosed with Fibromyalgia. Shortly after that I was also diagnosed with Hepatitis C. A liver biopsie showed scirosis in stage 3. I was put on interferon treatments 2 times . Both times failing.
6 years ago during my second round of treatments I had a falling out with my doctor and he dropped me as a patient. This was devestating to me , I was in the middle of treatments. Since my past experiance with doctors had been difficult, they always look at me like Im crazy or somthing. I just couldnt face a new one and go through it all over again. So I did not seek out a new doctor. Instead I chose to ignore my symptoms and get on with my life.
Over the last 6 years symptoms of the fibromyalgia have appeared and dissappeared. I just work when I can, and rest when I cant. I have managed without any meds. It has been very hard at times, but my mistrust in doctors have prevented me from seeking help.
The thing is this last year has been different. My symptoms have changed, they no longer go away at all. Im so very weak all the time. Just lifting my arms to brush my teeth is exahusting. While taking a shower my legs get so tired I must sit down. When I manage to climb up stairs, by the time I get to the top of the stairs I cant move. My leg muscles feel like they just ran 100 miles or somthing. I seem to trip alot. Just trying to step over somthing small. It seems I dont lift my foot high enough or somthing.
I have also had changes in my voice. As a person who loves to sing, this is awful. I just cant do it anymore. I once had a powerful voice. I could mimic Janice Joplin to the T. Not anymore. My voice is rough sounding, and nasal. When I attept to sing, I just dont seem to have the strengh to belt it out anymore. Its just not strong enough. I stopped singing, I just cant do it. Even talking is exahausting.
Last summer I attempted to go to a doctor. I went to my husbands G.P., I told him I was not doing good and what was going on. He gave me a knowing nod and a pat and said lets see where your liver is at. So he sent me for some blood work. When the test results came back, he said I was fine. In fact he said my liver tests were great and asked " Are you sure you have Hepatitis C"? He laughed a little and said not to worry I was fine. So I havnt been back.
Since then, (Aug. 06), I have continued to get weaker and more exahausted. I live in Alaska and the cold is unbearable. Just getting from the house to the car is agony. The instant I get chilled it seems as if my muscle just freeze up and become painfully stiff.
I used to get relief from my symptoms in the winter by going to a warmer climet. We own a house in Panama and I could spend the winter months there realatively symptom free. Unfortunatly this didnt work this year. I felt the same. Too weak to even go to the beach. I just seem to be to tired and every little movement seems to worsen my condidtion. The more I try to work my muscle even with small tasks, the weaker they get.
So Im at a loss as to what to do. I know that I just keep getting worse and worse. The past 6 months have been a downward spiral and I cant seem to stop it. I now spend 5 out of 7 days sitting in my recliner. Just too weak and tired to get up.
Ive started to wonder if my condition might be differnt then thought. I started researching, which led me here.
I might also mention that my Uncle died from ALS 7 or 8 years ago. Im not sure if anyone else in my family has had it or not.
My distrust in doctors prevents me from just randomly selecting one to go to. Im afraid if I go to another one who is patronizing, I might not attempt to ever go again.
So what do you all recomend for me? Should I go to a doctor and request to get tested? If so, where do I start? Who should I go to? Im just so confused and tired.
Maybe Im worrying for nothing. Maybe it is the fibromyagia, but my intuition tells me its not. Somthing is different.
Thanks for any advise you have, I really need it.
Best Regards,
Lisa
9 years ago after more then a year of going to the doctors with complaints of muscle soreness and fatigue I was finally diagnosed with Fibromyalgia. Shortly after that I was also diagnosed with Hepatitis C. A liver biopsie showed scirosis in stage 3. I was put on interferon treatments 2 times . Both times failing.
6 years ago during my second round of treatments I had a falling out with my doctor and he dropped me as a patient. This was devestating to me , I was in the middle of treatments. Since my past experiance with doctors had been difficult, they always look at me like Im crazy or somthing. I just couldnt face a new one and go through it all over again. So I did not seek out a new doctor. Instead I chose to ignore my symptoms and get on with my life.
Over the last 6 years symptoms of the fibromyalgia have appeared and dissappeared. I just work when I can, and rest when I cant. I have managed without any meds. It has been very hard at times, but my mistrust in doctors have prevented me from seeking help.
The thing is this last year has been different. My symptoms have changed, they no longer go away at all. Im so very weak all the time. Just lifting my arms to brush my teeth is exahusting. While taking a shower my legs get so tired I must sit down. When I manage to climb up stairs, by the time I get to the top of the stairs I cant move. My leg muscles feel like they just ran 100 miles or somthing. I seem to trip alot. Just trying to step over somthing small. It seems I dont lift my foot high enough or somthing.
I have also had changes in my voice. As a person who loves to sing, this is awful. I just cant do it anymore. I once had a powerful voice. I could mimic Janice Joplin to the T. Not anymore. My voice is rough sounding, and nasal. When I attept to sing, I just dont seem to have the strengh to belt it out anymore. Its just not strong enough. I stopped singing, I just cant do it. Even talking is exahausting.
Last summer I attempted to go to a doctor. I went to my husbands G.P., I told him I was not doing good and what was going on. He gave me a knowing nod and a pat and said lets see where your liver is at. So he sent me for some blood work. When the test results came back, he said I was fine. In fact he said my liver tests were great and asked " Are you sure you have Hepatitis C"? He laughed a little and said not to worry I was fine. So I havnt been back.
Since then, (Aug. 06), I have continued to get weaker and more exahausted. I live in Alaska and the cold is unbearable. Just getting from the house to the car is agony. The instant I get chilled it seems as if my muscle just freeze up and become painfully stiff.
I used to get relief from my symptoms in the winter by going to a warmer climet. We own a house in Panama and I could spend the winter months there realatively symptom free. Unfortunatly this didnt work this year. I felt the same. Too weak to even go to the beach. I just seem to be to tired and every little movement seems to worsen my condidtion. The more I try to work my muscle even with small tasks, the weaker they get.
So Im at a loss as to what to do. I know that I just keep getting worse and worse. The past 6 months have been a downward spiral and I cant seem to stop it. I now spend 5 out of 7 days sitting in my recliner. Just too weak and tired to get up.
Ive started to wonder if my condition might be differnt then thought. I started researching, which led me here.
I might also mention that my Uncle died from ALS 7 or 8 years ago. Im not sure if anyone else in my family has had it or not.
My distrust in doctors prevents me from just randomly selecting one to go to. Im afraid if I go to another one who is patronizing, I might not attempt to ever go again.
So what do you all recomend for me? Should I go to a doctor and request to get tested? If so, where do I start? Who should I go to? Im just so confused and tired.
Maybe Im worrying for nothing. Maybe it is the fibromyagia, but my intuition tells me its not. Somthing is different.
Thanks for any advise you have, I really need it.
Best Regards,
Lisa
