Handmaiden
Member
- Joined
- Dec 9, 2010
- Messages
- 19
- Reason
- Loved one DX
- Diagnosis
- 01/2011
- Country
- Uni
- State
- TX
- City
- Dallas Fort Worth
My brother had his appointment with his neurologist yesterday to go over the results of his spinal tap (the last test, after a year long testing process). The results of the spinal tap - Negative.
The diagnosis - Bulbar Onset ALS. The neurologist explained that he was in a category called ALS Possible (based on a protocol doctors are required to follow). The word "possible" was a bit confusing to my brother and myself - and when asked whether this meant that it was also possible that it was NOT ALS - the doctors said, it was not likely that it was something else that they have classifications of ALS which is: ALS Suspicious, ALS Possible, ALS Probable and ALD Definate. Basically, she told us that this was how doctors are required to classify where the person was their progression, which also helps to qualify them for participation in Clinical studies. Anyone else dealt with this classification from their doctor?
After the diagnosis - she recommended the following:
1. See a pulmonary doctor to see where his respiratory was - get on a bipap
2. Consider participation in Clinical trials at an ALS clinic located 2 miles from his neurologist's office - she said this would give him access to several doctors and the participation is free.
3. Visit Home - ClinicalTrials.gov to see available trials being conducted
4. ALSA.org for more information and support group meetings
5. Seeing a counselor who specializes in ALS
6. Consider depression medication for moods as well as to dry saliva in his mouth
7. Begin taking Rilutek. I asked her if it was too soon to begin this medication - she said no.
His next appointment with his neurologist won't be until March 15th. I guess she will meet with him about every three months to see where he is at in his progression and involve other doctors as necessary?
I guess I feel like she should have provided some kind of package with "What next" - to provide information about his finances, working, and basically information about evaluating his affairs. Or is it too soon for those things to be considered?
I am, and remain thankful for each of you.
The diagnosis - Bulbar Onset ALS. The neurologist explained that he was in a category called ALS Possible (based on a protocol doctors are required to follow). The word "possible" was a bit confusing to my brother and myself - and when asked whether this meant that it was also possible that it was NOT ALS - the doctors said, it was not likely that it was something else that they have classifications of ALS which is: ALS Suspicious, ALS Possible, ALS Probable and ALD Definate. Basically, she told us that this was how doctors are required to classify where the person was their progression, which also helps to qualify them for participation in Clinical studies. Anyone else dealt with this classification from their doctor?
After the diagnosis - she recommended the following:
1. See a pulmonary doctor to see where his respiratory was - get on a bipap
2. Consider participation in Clinical trials at an ALS clinic located 2 miles from his neurologist's office - she said this would give him access to several doctors and the participation is free.
3. Visit Home - ClinicalTrials.gov to see available trials being conducted
4. ALSA.org for more information and support group meetings
5. Seeing a counselor who specializes in ALS
6. Consider depression medication for moods as well as to dry saliva in his mouth
7. Begin taking Rilutek. I asked her if it was too soon to begin this medication - she said no.
His next appointment with his neurologist won't be until March 15th. I guess she will meet with him about every three months to see where he is at in his progression and involve other doctors as necessary?
I guess I feel like she should have provided some kind of package with "What next" - to provide information about his finances, working, and basically information about evaluating his affairs. Or is it too soon for those things to be considered?
I am, and remain thankful for each of you.
