justqanh
New member
- Joined
- Apr 11, 2018
- Messages
- 4
- Reason
- DX MND
- Diagnosis
- 00/2012
- Country
- VN
- State
- Vietnam
- City
- Vietnam
Hi everyone, first of all, english is not my native language so sorry if my words confuse you.
So I have been diagnosed with a mild type of SMA for 7 years, since I was 16-17 year old. I do a check up once every 2 years, and the result is still SMA everytime. The disease first starts with my right hand, with common LMN symptoms such as atrophy, weakness and fasciculation. It progresses very slowly, has just started to affect my left hand and both legs in the last 2 years, and my back and shoulders since the last year. Now I’m having overall atrophy and weakness of my body but not much, I’m still strong enough to go to the gym, doing deadlifts, chest press and stuff. I have no problem walking or doing everyday activities, just feel a bit fatigue recently.
Last week I went to a new neurologist, he said I may have some type of ALS, which terrifies me, since my SMN gene test is negative. I returned to the old neurologist for advice, she reassured me that she doesn’t think I have ALS, because Im missing UMN sign, the slow progression of my disease and the young onset age. She also said that only SMN gene testing is not enough since SMA covers a wide range of mutated gene. But I still worry about what the other neurologist said, because my disease seems to speed up recently.
So what do you guy think? Is there any case of ALS that progress that slow? Do I need to worry? If I do have ALS, with that slow progression what is my pronosis? Thanks
So I have been diagnosed with a mild type of SMA for 7 years, since I was 16-17 year old. I do a check up once every 2 years, and the result is still SMA everytime. The disease first starts with my right hand, with common LMN symptoms such as atrophy, weakness and fasciculation. It progresses very slowly, has just started to affect my left hand and both legs in the last 2 years, and my back and shoulders since the last year. Now I’m having overall atrophy and weakness of my body but not much, I’m still strong enough to go to the gym, doing deadlifts, chest press and stuff. I have no problem walking or doing everyday activities, just feel a bit fatigue recently.
Last week I went to a new neurologist, he said I may have some type of ALS, which terrifies me, since my SMN gene test is negative. I returned to the old neurologist for advice, she reassured me that she doesn’t think I have ALS, because Im missing UMN sign, the slow progression of my disease and the young onset age. She also said that only SMN gene testing is not enough since SMA covers a wide range of mutated gene. But I still worry about what the other neurologist said, because my disease seems to speed up recently.
So what do you guy think? Is there any case of ALS that progress that slow? Do I need to worry? If I do have ALS, with that slow progression what is my pronosis? Thanks