lakelover
Active member
- Joined
- Sep 5, 2011
- Messages
- 54
- Reason
- CALS
- Diagnosis
- 08/2011
- Country
- US
- State
- NC
- City
- Greensboro
All I want to do is cry. My husband of 39 ½ years has been diagnosed with ALS. I don’t understand how this could happen to a person who had absolutely no health issues and was extremely active. Throughout 2010 I kept telling my husband he was losing muscle mass. His whole body was shrinking but no pain or weakness or twitching. I even joked with him that although he had just turned 60 in April his body looked like an 80 year old man. I feel so guilty for saying that now!
In March of 2011 my husband said his left arm felt weak but I contributed it to improper biceps curls since he had been exercising over the past 4 months due to my ribbing about his body. By mid June the weakness was getting worse so he went to our regular doctor. They requested an MRI of his neck and referred him to a Nero Surgeon. The Nero Surgeon did not feel there was an issue with his neck and decided to perform an EMG and Nerve conductive test as well as blood tests. A week later we were called in and told there were some things that showed up on the EMG and they wanted to refer us to another Neurologist who dealt more with nerves and muscles issues. Two weeks later we are at our second Neurologists who had received the results from the previous blood test but not the EMG and Nerve conductive tests. She spent 35 minutes having Ralph touch his nose, sit, squat, stick his tongue out, stand on one foot, etc and on August 15th we heard “you have a motor neuron disease called ALS”. We were stunned. I had heard of the disease and knew it was horrific and fatal but little else. My husband kept saying this can't be, I'm opening a new business and I'm working 10-12 hours a day which she responded “well you can’t live forever, everyone has to die sometime”. There was no twitching, pain or spasms other than muscle atrophy and weakness in his left arm. She did not want to see the original EMG and Nerve Conductive tests because she wanted to perform her own. Two weeks later another EMG and NC tests were performed and afterward she told us she was standing by her diagnosis. We are less than 50 minutes from 2 very good ALS Clinics and wanted us to choose one we wanted to be referred to. After the second EMG & Nerve the twitching began. Massive twitching in his arms, hands, abs, back, butt, legs, chest and shoulders. It is difficult and heartbreaking to sleep next to him. He started having weakness in his right arm and both hands and difficulty holding his head up straight. Our appt at Duke Oct 25th started with another EMG and Nerve Conductive tests (yes, that’s right 3 in 4 months) and ALS again was confirmed.
In the two months between the first and second diagnosis I found this website and spent hours and hours reading people’s posts trying to learn everything I could about this disease. Everyone is so helpful and caring. I’ve learned this disease is horrible and attacks everyone different. It can progress fast or slow and difficult to diagnose. If this disease takes months and years to diagnose how did we get diagnose on the first visit? How far has he progressed that it was so easy to diagnose him? Dr. Bedlack said every motor neuron he has is sick. He still has about 30% use of his arms and hands and not showing any weakness in his legs and swallowing. He is still shrinking throughout his whole body and gets extremely fatigued and of course lot's and lot's of twitching. He has gone from a size 17 1/2 shirt last year to a 16 1/2 this year and looking frail. His weight has only decreased by 10 lbs in the last year (5lbs in the last 2 months).
I’m scared and can’t stand the thoughts of losing the man I love. I want my life back and know there is nothing I can do to change what is happening.
Wanda
.
In March of 2011 my husband said his left arm felt weak but I contributed it to improper biceps curls since he had been exercising over the past 4 months due to my ribbing about his body. By mid June the weakness was getting worse so he went to our regular doctor. They requested an MRI of his neck and referred him to a Nero Surgeon. The Nero Surgeon did not feel there was an issue with his neck and decided to perform an EMG and Nerve conductive test as well as blood tests. A week later we were called in and told there were some things that showed up on the EMG and they wanted to refer us to another Neurologist who dealt more with nerves and muscles issues. Two weeks later we are at our second Neurologists who had received the results from the previous blood test but not the EMG and Nerve conductive tests. She spent 35 minutes having Ralph touch his nose, sit, squat, stick his tongue out, stand on one foot, etc and on August 15th we heard “you have a motor neuron disease called ALS”. We were stunned. I had heard of the disease and knew it was horrific and fatal but little else. My husband kept saying this can't be, I'm opening a new business and I'm working 10-12 hours a day which she responded “well you can’t live forever, everyone has to die sometime”. There was no twitching, pain or spasms other than muscle atrophy and weakness in his left arm. She did not want to see the original EMG and Nerve Conductive tests because she wanted to perform her own. Two weeks later another EMG and NC tests were performed and afterward she told us she was standing by her diagnosis. We are less than 50 minutes from 2 very good ALS Clinics and wanted us to choose one we wanted to be referred to. After the second EMG & Nerve the twitching began. Massive twitching in his arms, hands, abs, back, butt, legs, chest and shoulders. It is difficult and heartbreaking to sleep next to him. He started having weakness in his right arm and both hands and difficulty holding his head up straight. Our appt at Duke Oct 25th started with another EMG and Nerve Conductive tests (yes, that’s right 3 in 4 months) and ALS again was confirmed.
In the two months between the first and second diagnosis I found this website and spent hours and hours reading people’s posts trying to learn everything I could about this disease. Everyone is so helpful and caring. I’ve learned this disease is horrible and attacks everyone different. It can progress fast or slow and difficult to diagnose. If this disease takes months and years to diagnose how did we get diagnose on the first visit? How far has he progressed that it was so easy to diagnose him? Dr. Bedlack said every motor neuron he has is sick. He still has about 30% use of his arms and hands and not showing any weakness in his legs and swallowing. He is still shrinking throughout his whole body and gets extremely fatigued and of course lot's and lot's of twitching. He has gone from a size 17 1/2 shirt last year to a 16 1/2 this year and looking frail. His weight has only decreased by 10 lbs in the last year (5lbs in the last 2 months).
I’m scared and can’t stand the thoughts of losing the man I love. I want my life back and know there is nothing I can do to change what is happening.
Wanda
.
