crue1965
New member
- Joined
- Feb 15, 2014
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 01/2017
- Country
- US
- State
- Michigan
- City
- byron
Hello to all again...
My first post was quite some time ago. 02-15-2014... At that time I was headed to University of Michigan Neurological Dept. for my 1st visit to the ALS Clinic.
At U of M I went through a barrage of test, over an 8 month period. I went from possibly ALS, to Possibly Bone/Blood cancer, back to ALS or MMN. Toward the end of 2014 I received 3 months of IVIG infusions with no positive results, no conduct block shown on my EMG or elevated GM1 antibodies in blood work.
At this time I could no longer perform my daily duties at the plant in I was working at so I had to quit and take a different position with another company where I could perform my job. I was without insurance for a bit so I stopped going to the doctor for over 2 years.
Since being seen at U of M my symptoms have progressed, atrophy in my left hand, arm, shoulder, and back, later in 2016 I noticed weakness in my right hand. So with my wives persistent prodding I made an appointment with Henry Ford ALS Center.
My appointment was on January 17th 2017. I was seen by Dr. Newman. He had received all my records and doctors notes from Dr. Goutman of U of M, in his notes he stated “all signs point toward ALS but the progressions is very slow”.. I was diagnosed on January 17th with ALS, slow progressing. My doctor has started me on Riluzole.
I’m currently still working to maintain our household and medical insurance, not sure if I should continue.
I do understand to predict the progression rate of this disease you will need a crystal ball. I’m just wondering if anyone here has been, or knows of someone, diagnosed with Slow progressing ALS.
• What has your experience been?
• Could this possibly still be something else?
• Should I continue working?
Any advice will be greatly appetited.
Scott
My first post was quite some time ago. 02-15-2014... At that time I was headed to University of Michigan Neurological Dept. for my 1st visit to the ALS Clinic.
At U of M I went through a barrage of test, over an 8 month period. I went from possibly ALS, to Possibly Bone/Blood cancer, back to ALS or MMN. Toward the end of 2014 I received 3 months of IVIG infusions with no positive results, no conduct block shown on my EMG or elevated GM1 antibodies in blood work.
At this time I could no longer perform my daily duties at the plant in I was working at so I had to quit and take a different position with another company where I could perform my job. I was without insurance for a bit so I stopped going to the doctor for over 2 years.
Since being seen at U of M my symptoms have progressed, atrophy in my left hand, arm, shoulder, and back, later in 2016 I noticed weakness in my right hand. So with my wives persistent prodding I made an appointment with Henry Ford ALS Center.
My appointment was on January 17th 2017. I was seen by Dr. Newman. He had received all my records and doctors notes from Dr. Goutman of U of M, in his notes he stated “all signs point toward ALS but the progressions is very slow”.. I was diagnosed on January 17th with ALS, slow progressing. My doctor has started me on Riluzole.
I’m currently still working to maintain our household and medical insurance, not sure if I should continue.
I do understand to predict the progression rate of this disease you will need a crystal ball. I’m just wondering if anyone here has been, or knows of someone, diagnosed with Slow progressing ALS.
• What has your experience been?
• Could this possibly still be something else?
• Should I continue working?
Any advice will be greatly appetited.
Scott