qualitybabe823
Active member
- Joined
- Jul 25, 2007
- Messages
- 46
- Reason
- Learn about ALS
- Country
- Uni
- State
- Wi
- City
- Watertown
First let me give you a bit of history, my father died of ALS in 1995, he was diagnosed in 1993 after 2 years of testing. When he did finally get his diagnosed, he was given 2 years to live, he made it 14 months. He had Bulbar form ALS, it all started on the top of his head and face. We pulled his family records, as his mother had all the same types of symptoms, only it started in her lower extremities. Back in those days they did not know about ALS, so it's only speculation as to whether she truly had it.
Now on to me, 2 years ago I started having muscle cramping in my calves and thighs. My feet would twist up into knots, I would literally have to reach down and pull them out with my hands. My walking became robotic in nature, I had to really think about walking. My family doctor gave me a referral to the Neurology department of a University hospital. I have gone through every kind of test, I've had MRI's of my head, neck and complete spine, found nothing. They have tested me with EMG and EEG and have diagnosed me with Peripheral Neuropathy. THey found my MMA levels to be extremely elevated in the blood so they started me on B12 shots. I did the B12 shots for roughly 7 months, it seems my symptoms did not progress or recede during that time. Now my MMA levels are normal, so no more shots. I now have profound weakness in my right arm that started around April of this year. I was referred back to my family doctor as they had no explanation for what is happening to me. I saw my family doctor last week, and was shocked at what he said to me. He stated that I should not be concerned as to WHY this is happening, and that we are going to try to fight it instead. The way I look at it, HOW do you know how to fight it if you don't know the root cause? SO anyway, he has put me on a regiman of walking 2 miles in 30 min 3 times a week and alternate physical therapy the days in between taking 1 day to rest. I have done the walking for a week and I feel my legs getting weaker, I went to physical therapy today and they did an evaluation on me. My right side, arm, hand, leg and foot are remarkedly weaker than my left. This is unusual as I am right handed. THey told me I have foot drop in both feet and atrophy of the muscles in my feet, (I have extremely HIGH arches) I have actually dropped 1.5 shoe sizes in the past 1.5 years and yet have not lost any weight. Given my family history, I try hard not to think ALS, but I lived through and took care of my father, I know it like I know the back of my hand and I am scared to death. I just want someone to listen to me and take me seriously. I need to know what is happening to me.....I feel myself getting weaker day by day, little by little, I try to look at the future, but if I feel this bad now, where will I be next year? I have fasciculations in the muscles of my legs, arms, feet and even in the palms of my hands, they are random and don't seem to coincide with any activities. I have problems swallowing pills, they seem to collect in my throat, if I don't drink large quantities of water, they don't go down. I sometimes aspirate on my own saliva.
I am in the process of trying to obtain my father's medical records, what I want to do is take his records and mine and try to find a doctor who will take me seriously. DOes anyone out there know how I would go about obtaining my father's medical records, both my parents are deceased so it's not like I can have my mother obtain them. Also, how do you get insurance companies to pay if your family doctor won't give you another referral? Can anyone help me out here? Does this sound like I should be seeing an ALS clinic? I am scared ..............
Now on to me, 2 years ago I started having muscle cramping in my calves and thighs. My feet would twist up into knots, I would literally have to reach down and pull them out with my hands. My walking became robotic in nature, I had to really think about walking. My family doctor gave me a referral to the Neurology department of a University hospital. I have gone through every kind of test, I've had MRI's of my head, neck and complete spine, found nothing. They have tested me with EMG and EEG and have diagnosed me with Peripheral Neuropathy. THey found my MMA levels to be extremely elevated in the blood so they started me on B12 shots. I did the B12 shots for roughly 7 months, it seems my symptoms did not progress or recede during that time. Now my MMA levels are normal, so no more shots. I now have profound weakness in my right arm that started around April of this year. I was referred back to my family doctor as they had no explanation for what is happening to me. I saw my family doctor last week, and was shocked at what he said to me. He stated that I should not be concerned as to WHY this is happening, and that we are going to try to fight it instead. The way I look at it, HOW do you know how to fight it if you don't know the root cause? SO anyway, he has put me on a regiman of walking 2 miles in 30 min 3 times a week and alternate physical therapy the days in between taking 1 day to rest. I have done the walking for a week and I feel my legs getting weaker, I went to physical therapy today and they did an evaluation on me. My right side, arm, hand, leg and foot are remarkedly weaker than my left. This is unusual as I am right handed. THey told me I have foot drop in both feet and atrophy of the muscles in my feet, (I have extremely HIGH arches) I have actually dropped 1.5 shoe sizes in the past 1.5 years and yet have not lost any weight. Given my family history, I try hard not to think ALS, but I lived through and took care of my father, I know it like I know the back of my hand and I am scared to death. I just want someone to listen to me and take me seriously. I need to know what is happening to me.....I feel myself getting weaker day by day, little by little, I try to look at the future, but if I feel this bad now, where will I be next year? I have fasciculations in the muscles of my legs, arms, feet and even in the palms of my hands, they are random and don't seem to coincide with any activities. I have problems swallowing pills, they seem to collect in my throat, if I don't drink large quantities of water, they don't go down. I sometimes aspirate on my own saliva.
I am in the process of trying to obtain my father's medical records, what I want to do is take his records and mine and try to find a doctor who will take me seriously. DOes anyone out there know how I would go about obtaining my father's medical records, both my parents are deceased so it's not like I can have my mother obtain them. Also, how do you get insurance companies to pay if your family doctor won't give you another referral? Can anyone help me out here? Does this sound like I should be seeing an ALS clinic? I am scared ..............