shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
My name is Rachelle. My husband, Jim was diagnosed 7/2/09 w/ frontal lobe dementia and 8/14 with MND. The dr doesn't want to "pigeon hole" him with the diagnosis of ALS yet - he is having "spasms" in his lower extremities and tremors. He has bilateral Babinski sign, hypersensitive reflexes, dysphasia and mumbled speech, also unable to project his voice. Plus he has the cognitive issues.
All of his exams (labs, CT, MRI and EMG) have been negative - however the tremors and spasms are obviously there as well as the choking episodes. Has anyone else had all these negative tests AND be diagnosed with ALS. His medical records state ALS Syndrome, but the neurologist told us frontal-temporal lobe dementia w/MND.
Are there any other tests I should be requesting? He will be reevaluated in Dec. They will probably do a spinal tap and gene-mapping at that time.
I don't know what else to do. I am confident in his doctors (he has a team from the Cleveland Clinic Mellon Center) which is apparently an ALS Center. I was ready for a diagnosis in August - and when we didn't get one I was devestated. In hind-site he probably started with dementia symptoms 2 yrs ago. Noticible dementia symptoms since Oct 2008 and MND symptoms since the beginning of this year. How long do between symptoms and a "true" diagnosis.
How long until I have to worry about him carrying for himself and our daughters (ages 5 and 2). He has been ok'd to continue caring for them for now. I know there are no definate answers - but I would like some guidance and real-life experiance.
Sorry to ramble - but I have been looking everywhere for help.
All of his exams (labs, CT, MRI and EMG) have been negative - however the tremors and spasms are obviously there as well as the choking episodes. Has anyone else had all these negative tests AND be diagnosed with ALS. His medical records state ALS Syndrome, but the neurologist told us frontal-temporal lobe dementia w/MND.
Are there any other tests I should be requesting? He will be reevaluated in Dec. They will probably do a spinal tap and gene-mapping at that time.
I don't know what else to do. I am confident in his doctors (he has a team from the Cleveland Clinic Mellon Center) which is apparently an ALS Center. I was ready for a diagnosis in August - and when we didn't get one I was devestated. In hind-site he probably started with dementia symptoms 2 yrs ago. Noticible dementia symptoms since Oct 2008 and MND symptoms since the beginning of this year. How long do between symptoms and a "true" diagnosis.
How long until I have to worry about him carrying for himself and our daughters (ages 5 and 2). He has been ok'd to continue caring for them for now. I know there are no definate answers - but I would like some guidance and real-life experiance.
Sorry to ramble - but I have been looking everywhere for help.