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pmbenb83

Distinguished member
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399
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03/2008
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VA
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Hello everyone. Over the past 6 months, I have visited this forum daily for inspiration and questions to bring with us to my husband's neurology appointments. You have all been a huge help to me. I hope you all know how amazing you all are! Thank you for being so open and for just being you! :)

My husband's story is very similar to many here. A few years ago, he started having trouble with severe muscle spasms/cramping after any type of physical activity in his hands, feet and calf muscles. He has always been very athletic and physically active either at work as a police officer, in the gym, or playing on a coed softball team with our oldest daughter. When this began, we contributed these symptoms to dehydration and moved on. About a year ago, our youngest daughter was teasing him saying how small his arms had become as a joke, because he has always been a weight lifter and she knew he hadn't been to the gym for a while. Kids... you gotta love 'em! lol What we didn't know was that he could barely lift a 5 lb. dumbbell anymore. Then about 9 months ago came twitching in his right arm, which had also become much smaller than the left arm. He had shoulder surgery on that side, so we contributed this to the surgery and again we moved on. A few months later, the twitching moved across his chest and down his left arm. When he tried to change the volume on the car radio and couldn't get his fingers to unlock from a spasm, I finally said that I was making an appointment with a neurologist, because that was minimal activity and should not have caused this reaction. There were no more excuses. Being a police officer, he has been afraid of being diagnosed because he could lose his job and he only has 4 years to go for retirement.

He saw the neurologist late Feb 07. She did an EMG which showed "slight activity" and put him on Tegretol for the twitching. It helped, but he ended up in the hospital in April 07 with either a Tegretol reaction or a tick bite (still undiagnosed) but whatever it was it attacked his liver, which is now back to normal thank God. In the hospital he had CTs of his head, MRI of his whole body, and abdominal ultrasound, which were all normal. Ever since his hospitalization, he has been weak and cannot do anything around the house without causing severe cramping and excruciating neck spasm that causes a bad headache. His CPK was elevated again, so he went back to the neurologist in July. He had another EMG which showed "significant changes." He had a blood test for Kennedy's which was normal; another MRI, which was normal, except for a C6-C7 concentric annular bulge. I was hoping for something related to his shoulder injury back in 2000, but nothing there.

His neurologist sent him to UVA to a neurology specialist, Dr. Ted Burns, whom he saw today. He did another EMG, which showed abnormalities. He ordered another blood test, GM1. We should get this result in 3-4 weeks. He said that usually ALS presents differently, but he has seen it present this way in the early stages, BUT he does not want to say it is ALS until he checks for an inflammatory process. Also today, he had very little reflexes. The doctor said, "You come to the neurologist and you leave your reflexes at home." lol We like his bedside manner. We've learned that you have to keep your humor or you'll go nuts.

I feel like we have been on an awful roller coaster ride of emotions. We have 3 children in college and none of them want to leave right now. We have encouraged them to continue their education, and as a family, we will deal with whatever this is when there is a diagnosis. I have been a medical transcriptionist for almost 10 years and know not to jump to conclusions, but it is easier said than done. Right?

If anyone has any other suggestions of what we can/should ask these neurologists we would truly be grateful. Also, is there a good clinic that we should take my husband to in the Virginia/DC/Maryland area or is UVA a good place to be?

Thank you again.
Pam
 

brooksea

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Joined
Sep 27, 2006
Messages
5,171
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Country
HM
Pam,

Sorry you had to join the forum. From what you've described it could be ALS, hate to say it. But I' not a doc. I'm not familiar with the Virginia area, so can't answer that one.

Maybe someone else will be able to answer you in the AM.

Please keep us updated.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
pmbenb83 said:
Hello everyone. Over the past 6 months, I have visited this forum daily for inspiration and questions to bring with us to my husband's neurology appointments. You have all been a huge help to me. I hope you all know how amazing you all are! Thank you for being so open and for just being you! :)

My husband's story is very similar to many here. A few years ago, he started having trouble with severe muscle spasms/cramping after any type of physical activity in his hands, feet and calf muscles. He has always been very athletic and physically active either at work as a police officer, in the gym, or playing on a coed softball team with our oldest daughter. When this began, we contributed these symptoms to dehydration and moved on. About a year ago, our youngest daughter was teasing him saying how small his arms had become as a joke, because he has always been a weight lifter and she knew he hadn't been to the gym for a while. Kids... you gotta love 'em! lol What we didn't know was that he could barely lift a 5 lb. dumbbell anymore. Then about 9 months ago came twitching in his right arm, which had also become much smaller than the left arm. He had shoulder surgery on that side, so we contributed this to the surgery and again we moved on. A few months later, the twitching moved across his chest and down his left arm. When he tried to change the volume on the car radio and couldn't get his fingers to unlock from a spasm, I finally said that I was making an appointment with a neurologist, because that was minimal activity and should not have caused this reaction. There were no more excuses. Being a police officer, he has been afraid of being diagnosed because he could lose his job and he only has 4 years to go for retirement.

He saw the neurologist late Feb 07. She did an EMG which showed "slight activity" and put him on Tegretol for the twitching. It helped, but he ended up in the hospital in April 07 with either a Tegretol reaction or a tick bite (still undiagnosed) but whatever it was it attacked his liver, which is now back to normal thank God. In the hospital he had CTs of his head, MRI of his whole body, and abdominal ultrasound, which were all normal. Ever since his hospitalization, he has been weak and cannot do anything around the house without causing severe cramping and excruciating neck spasm that causes a bad headache. His CPK was elevated again, so he went back to the neurologist in July. He had another EMG which showed "significant changes." He had a blood test for Kennedy's which was normal; another MRI, which was normal, except for a C6-C7 concentric annular bulge. I was hoping for something related to his shoulder injury back in 2000, but nothing there.

His neurologist sent him to UVA to a neurology specialist, Dr. Ted Burns, whom he saw today. He did another EMG, which showed abnormalities. He ordered another blood test, GM1. We should get this result in 3-4 weeks. He said that usually ALS presents differently, but he has seen it present this way in the early stages, BUT he does not want to say it is ALS until he checks for an inflammatory process. Also today, he had very little reflexes. The doctor said, "You come to the neurologist and you leave your reflexes at home." lol We like his bedside manner. We've learned that you have to keep your humor or you'll go nuts.

I feel like we have been on an awful roller coaster ride of emotions. We have 3 children in college and none of them want to leave right now. We have encouraged them to continue their education, and as a family, we will deal with whatever this is when there is a diagnosis. I have been a medical transcriptionist for almost 10 years and know not to jump to conclusions, but it is easier said than done. Right?

If anyone has any other suggestions of what we can/should ask these neurologists we would truly be grateful. Also, is there a good clinic that we should take my husband to in the Virginia/DC/Maryland area or is UVA a good place to be?

Thank you again.
Pam
Pam I would take a ride to John Hopkins Dr Jeffrey Rothstein in Maryland Worth the trip. Take all you records and xrays he will go over them and tell you if he has it or not. Dont wait like I did I went to 6 neuros who never would commit to a DX and the anxiety of not knowing is terrible. He is the head scientist working on a cure>Good Luck Pat
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Thanks Pat and CJ

Thanks Pat for recommending a doctor at Johns Hopkins. I am so sorry that you went through 6 months of not knowing. I hope that you are doing well today. ;) I will try to get an appointment as soon as possible. I'm not giving up hope that it is a MND that may be treated or slowed down by immunomodulatory therapy. It just seems like his illness in April seemed to speed up whatever this is.

Right now, I'm probably grasping, but until we hear a definite diagnosis, I don't want to give up hope. I constantly repeat the motto that I've learned through this website.... hope for the best, prepare for the worst and live for today. I'm going to get him the best help available! Everyone touched by this disease deserves nothing less than the BEST! Thanks again and have a great day. Pam

CJ ~ Thank you for your post too. As a caregiver, if you don't mind, I may need to touch base with you in the future. I'm definitely not nurse material and pretty squeemish, but for him I will do anything. :) I hope you and your husband have a great day too! Pam
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Pam. I am glad you decided to join us. Let's hope they come up with something other than ALS for your Hubby. Best wishes and keep us informed. Cindy
 
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