hawk11
New member
- Joined
- Apr 18, 2017
- Messages
- 4
- Reason
- Lost a loved one
- Diagnosis
- 12/2013
- Country
- US
- State
- MA
- City
- Boston
Hello,
Thank you for allowing me in your group. My sister was diagnosed in 12-12-13, she passed 5-4-15. There are 7 children total, a brother died at 22 months unrelated to ALS, all in relatively good health. My mother is adopted. Both parents 86, still living and in relatively good health. My sister also had FTD.
My question...why are people familiar with ALS encouraging me to get tested? The ALS clinic stated she had sporadic ALS.
I admit around the time of her diagnosis I was having strange symptoms including now twitching, I do not believe I have ALS, all blood work is fine for mineral/vitamin. My sister hid her symptoms it until it was too obvious to ignore. She was diagnosed on first visit to Neurologist. Due to her FTD and Bulbar onset, it was hard to pinpoint what symptoms she had first.
Why are people encouraging all of us to be tested? Have a missed an important part of familial and Sporadic ALS? I am being told I have a 50% increase chance of getting ALS, scary given my symptoms. If I learned anything from all of this...doctors are not as knowledgable outside their area of expertise, with all respect implied....it is the truth.
Thank you so much.
Thank you for allowing me in your group. My sister was diagnosed in 12-12-13, she passed 5-4-15. There are 7 children total, a brother died at 22 months unrelated to ALS, all in relatively good health. My mother is adopted. Both parents 86, still living and in relatively good health. My sister also had FTD.
My question...why are people familiar with ALS encouraging me to get tested? The ALS clinic stated she had sporadic ALS.
I admit around the time of her diagnosis I was having strange symptoms including now twitching, I do not believe I have ALS, all blood work is fine for mineral/vitamin. My sister hid her symptoms it until it was too obvious to ignore. She was diagnosed on first visit to Neurologist. Due to her FTD and Bulbar onset, it was hard to pinpoint what symptoms she had first.
Why are people encouraging all of us to be tested? Have a missed an important part of familial and Sporadic ALS? I am being told I have a 50% increase chance of getting ALS, scary given my symptoms. If I learned anything from all of this...doctors are not as knowledgable outside their area of expertise, with all respect implied....it is the truth.
Thank you so much.