BeautifulWreck
Member
- Joined
- Mar 29, 2011
- Messages
- 24
- Reason
- Learn about ALS
- Country
- US
- State
- AL
- City
- Gulf Coast
For the last few weeks I have been stalking the forums here and I am a bit nervous to be posting at all. First I am the nervous nelly wife - don't be too hard on me.
Around Thanksgiving my husband J came to me about having pain, numbness, and tingling in his left arm. I figured he had done too much in the gym and had injured himself. He had recently turned 40 and was out doing himself. I told him to give it awhile, to stay out of the gym and see of his arm cleared up. It didn't. After talking with our neighbor who is a physical therapist a month later he recommended that J go see a neurosurgeon bc it felt like C6 was herniated and could be pinching off the nerve in his arm. We had to see our GP to get the referral and he agreed after viewing Xrays of the neck and doing an examination. Onward we went. MRI was done first week of January where we were told that yes, even though there was a herniation at C6 the MRI was "clean" meaning there was nothing pinching/compressing the nerves at all in the left arm and that he was not a candidate for surgery. He was given steroids and an anti-inflammatory and told to return in a month.
Over the next five weeks, the numbness and pain disappeared. However, his arm was still weak and had begun to atrophy. J was also having trouble lifting things (like holding our children, groceries, laundry) that he never had before. I also noticed that his chest muscle and shoulder muscle were also smaller and that they twitched. He was noticeably lopsided. We passed it off as him not using it as much and waited for the next appointment.
Second week of Feb. come and the neurosurgeon says that obviously with the condition of his arm, there is something pinched and he needed surgery, showed a video about it and told J to call back when he was ready. Something didn't seem right and after discussing it with our PT friend and another friend that is a dr we opted to go for a second opinion.
End of Feb we have second neurosurgeon appt and the left arm is worse. It is smaller, weaker, and twitching - even when not under strain. So the second guy goes over everything with us and says he doesn't believe J is a candidate for surgery because his MRI is not showing any problems and then goes on to do more of an exam. At first I was a little amused, especially when he was asking J to stick out his tongue and said "That looks good" and then he want on to note the twitching in his arm and could J feel it. He then brought up have a neuromuscular disorder and had we ever heard of ALS. This was not something we even had thought could be wrong (like who would?) That day an EMG and NCT were scheduled.
I've always said that if the doctor puts you in the nice exam room with the cushy chairs that you are not going to get good news, and if they tell you they are not going to charge you for your appt you better just hold on for the ride. EMG showed abnormality through out the left arm, and he had no signs that the problems he is having are coming from brachial plexitis or from his neck or spine. Not the news we were expecting or hoping for. Again neuromuscular disorders were brought up again and ALS specifically.
We have an appt. with a neurologist the first week of April and we really do not know what to expect next. (brain mri, blood tests I am sure) So far nothing else appears to be wrong (he has had some vertigo) but the left arm has not improved at all and the twitching seems to be worse in the shoulder and chest. We did speak to our GP about the results and he thinks if it was ALS that J's speech and swallowing would be affected first (not sure why, this is what he told us)
So this is where we are at. Any words of wisdom or advice is welcomed.
Kim
Around Thanksgiving my husband J came to me about having pain, numbness, and tingling in his left arm. I figured he had done too much in the gym and had injured himself. He had recently turned 40 and was out doing himself. I told him to give it awhile, to stay out of the gym and see of his arm cleared up. It didn't. After talking with our neighbor who is a physical therapist a month later he recommended that J go see a neurosurgeon bc it felt like C6 was herniated and could be pinching off the nerve in his arm. We had to see our GP to get the referral and he agreed after viewing Xrays of the neck and doing an examination. Onward we went. MRI was done first week of January where we were told that yes, even though there was a herniation at C6 the MRI was "clean" meaning there was nothing pinching/compressing the nerves at all in the left arm and that he was not a candidate for surgery. He was given steroids and an anti-inflammatory and told to return in a month.
Over the next five weeks, the numbness and pain disappeared. However, his arm was still weak and had begun to atrophy. J was also having trouble lifting things (like holding our children, groceries, laundry) that he never had before. I also noticed that his chest muscle and shoulder muscle were also smaller and that they twitched. He was noticeably lopsided. We passed it off as him not using it as much and waited for the next appointment.
Second week of Feb. come and the neurosurgeon says that obviously with the condition of his arm, there is something pinched and he needed surgery, showed a video about it and told J to call back when he was ready. Something didn't seem right and after discussing it with our PT friend and another friend that is a dr we opted to go for a second opinion.
End of Feb we have second neurosurgeon appt and the left arm is worse. It is smaller, weaker, and twitching - even when not under strain. So the second guy goes over everything with us and says he doesn't believe J is a candidate for surgery because his MRI is not showing any problems and then goes on to do more of an exam. At first I was a little amused, especially when he was asking J to stick out his tongue and said "That looks good" and then he want on to note the twitching in his arm and could J feel it. He then brought up have a neuromuscular disorder and had we ever heard of ALS. This was not something we even had thought could be wrong (like who would?) That day an EMG and NCT were scheduled.
I've always said that if the doctor puts you in the nice exam room with the cushy chairs that you are not going to get good news, and if they tell you they are not going to charge you for your appt you better just hold on for the ride. EMG showed abnormality through out the left arm, and he had no signs that the problems he is having are coming from brachial plexitis or from his neck or spine. Not the news we were expecting or hoping for. Again neuromuscular disorders were brought up again and ALS specifically.
We have an appt. with a neurologist the first week of April and we really do not know what to expect next. (brain mri, blood tests I am sure) So far nothing else appears to be wrong (he has had some vertigo) but the left arm has not improved at all and the twitching seems to be worse in the shoulder and chest. We did speak to our GP about the results and he thinks if it was ALS that J's speech and swallowing would be affected first (not sure why, this is what he told us)
So this is where we are at. Any words of wisdom or advice is welcomed.
Kim