jpsteeler99
Active member
- Joined
- Jun 7, 2012
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 06/2012
- Country
- US
- State
- NJ
- City
- Waldwick
First off, let me say I am in no way a hypochondriac. I have high cholesterol and acid reflux disiese but other than that, I hardly ever get sick. I do have a pain in my side for over six years but the doctors couldn't find anything so I just live with it. I am 44 years old and fairly athletic and active but I do work at a desk all day so that limits me a little.
It started about six months ago. My legs just didn't work like they used to. It didn't seem like muscle weakness and I still don't think they feel weak. They just don't move right and I have some foot drop and instability. I also have fasciculations all over my body and they are constant(2-3 per second in every muscle all day long). I have muscle cramping in my calves, hands & feet mainly but in some other muscles as well. I may be having a little difficulty with my speech but nothing major. I have no breathing problems or swallowing problems. I do have an excessive amount of Phlegm the last couple months but I think that might be allergies. Although, I have never had allergies before. The phlegm problem caused my ears to become clogged. They were clogged for about a month and then I when to an ENT and he inserted tubes in my ears and now a couple weeks later, my ears are fine. Still having a phlegm problem but it is getting better. I went to see a Neurologist and she did her initial testing and felt there could be a problem and further testing needed to be done. She mentioned NMD/ALS as a possibilty during this consultation. Seemed weird to me to throw something like that out there without even doing some serious testing. She took blood and urine samples and scheduled me for an EMG the next week. The office called and told me the blood and urine samples came back negative. The next week I went in for my EMG and NCV tests. Both test came back positive for NMD. She, again, mentioned ALS and may want me to see an ALS specialist. But before all that, she had me go for an MRI of my brain and cervical spine. I have not received the results for that and she only works Tue-Thur so now I have to wait until the middle of next week to get those results. She seems kind of young and inexperienced so I am not sure what to think here. I thought for sure she was going to say I was just stressed out. I almost didn't go to see her because I thought it was stress-related(see story below). Also, all the symptoms I listed above got worse when I started researching ALS and found out what it was. I also noticed that my left arm(the one she tested) seems to be a little weakened after the EMG/NCV. I would have taken everyone's advice and gone on with my life had I not tested positive on the EMG/NCV tests. Now I am freaking out.
Background: I lost my job in June of 2009. I worked at a Chrysler dealer for 15 years and when the government let them shut down over 700 dealers during their bankruptcy hearings, we were one of them. I had a very secure job and so did my wife. We were both making really good money, we had a nice house, 2 beautiful children and a place up in the country to go to on the weekends. Life was good. It all went down hill from there. Couldnt find a job so I ran my own business for a while that was somewhat successful but the bills were piling up for the business and personally. I found a job but it didn't pay near what I was getting paid. I continued to run my own business as well. It was a mail order business so I could do it nights and weekends. The bills continued to pile up so my wife and I decided to try and relocate to a more affordable area in late 2011. I found a really nice job in NC and we decided to go for it. I had lived in NJ for over 25 years and my wife and kids all their lives. This was a huge decision. We got our house in order and put it on the market in late February. I left for NC to start my new job. The wife and kids stayed back to finish out the school year. Well, the house sold the first week on the market. The job seemed to be going well but 2 months in, they pulled me and said they weren't happy and that I needed to run things their way or the highway. My wife has a very secure job as a teacher in NJ with great health benefits so I decided to take the highway. I just didn't see it working out with them and I wasn't willing to risk the security of her job and benefits. I moved back to NJ but now we are homeless because I don't have a job and even with a sizeable downpayment sitting in our bank account from the sale of our house, no one is going to give us a mortgage. So now we have to rent a house. I've owned a home now for over 15 years so going back to renting was a little dis-heartening. So, needless to stay, I have had 3 very stressful years leading up to this diagnosis.
I am setting up a second opinion but I just thought I would spill my guts here to see what you guys think. All the internet info is the same and very vague. I figured it may be best to hear from people who have dealt with it personally. Any input would be appreciated.
I would also like to say I am sorry that I never had a need for this forum until now. I think even if I am not diagnosed with ALS, I will be back to help other newbies. This has been the scariest 2 weeks of my life and a very emotional time.
It started about six months ago. My legs just didn't work like they used to. It didn't seem like muscle weakness and I still don't think they feel weak. They just don't move right and I have some foot drop and instability. I also have fasciculations all over my body and they are constant(2-3 per second in every muscle all day long). I have muscle cramping in my calves, hands & feet mainly but in some other muscles as well. I may be having a little difficulty with my speech but nothing major. I have no breathing problems or swallowing problems. I do have an excessive amount of Phlegm the last couple months but I think that might be allergies. Although, I have never had allergies before. The phlegm problem caused my ears to become clogged. They were clogged for about a month and then I when to an ENT and he inserted tubes in my ears and now a couple weeks later, my ears are fine. Still having a phlegm problem but it is getting better. I went to see a Neurologist and she did her initial testing and felt there could be a problem and further testing needed to be done. She mentioned NMD/ALS as a possibilty during this consultation. Seemed weird to me to throw something like that out there without even doing some serious testing. She took blood and urine samples and scheduled me for an EMG the next week. The office called and told me the blood and urine samples came back negative. The next week I went in for my EMG and NCV tests. Both test came back positive for NMD. She, again, mentioned ALS and may want me to see an ALS specialist. But before all that, she had me go for an MRI of my brain and cervical spine. I have not received the results for that and she only works Tue-Thur so now I have to wait until the middle of next week to get those results. She seems kind of young and inexperienced so I am not sure what to think here. I thought for sure she was going to say I was just stressed out. I almost didn't go to see her because I thought it was stress-related(see story below). Also, all the symptoms I listed above got worse when I started researching ALS and found out what it was. I also noticed that my left arm(the one she tested) seems to be a little weakened after the EMG/NCV. I would have taken everyone's advice and gone on with my life had I not tested positive on the EMG/NCV tests. Now I am freaking out.
Background: I lost my job in June of 2009. I worked at a Chrysler dealer for 15 years and when the government let them shut down over 700 dealers during their bankruptcy hearings, we were one of them. I had a very secure job and so did my wife. We were both making really good money, we had a nice house, 2 beautiful children and a place up in the country to go to on the weekends. Life was good. It all went down hill from there. Couldnt find a job so I ran my own business for a while that was somewhat successful but the bills were piling up for the business and personally. I found a job but it didn't pay near what I was getting paid. I continued to run my own business as well. It was a mail order business so I could do it nights and weekends. The bills continued to pile up so my wife and I decided to try and relocate to a more affordable area in late 2011. I found a really nice job in NC and we decided to go for it. I had lived in NJ for over 25 years and my wife and kids all their lives. This was a huge decision. We got our house in order and put it on the market in late February. I left for NC to start my new job. The wife and kids stayed back to finish out the school year. Well, the house sold the first week on the market. The job seemed to be going well but 2 months in, they pulled me and said they weren't happy and that I needed to run things their way or the highway. My wife has a very secure job as a teacher in NJ with great health benefits so I decided to take the highway. I just didn't see it working out with them and I wasn't willing to risk the security of her job and benefits. I moved back to NJ but now we are homeless because I don't have a job and even with a sizeable downpayment sitting in our bank account from the sale of our house, no one is going to give us a mortgage. So now we have to rent a house. I've owned a home now for over 15 years so going back to renting was a little dis-heartening. So, needless to stay, I have had 3 very stressful years leading up to this diagnosis.
I am setting up a second opinion but I just thought I would spill my guts here to see what you guys think. All the internet info is the same and very vague. I figured it may be best to hear from people who have dealt with it personally. Any input would be appreciated.
I would also like to say I am sorry that I never had a need for this forum until now. I think even if I am not diagnosed with ALS, I will be back to help other newbies. This has been the scariest 2 weeks of my life and a very emotional time.