Bmgilst
Member
- Joined
- Feb 11, 2016
- Messages
- 12
- Reason
- Loved one DX
- Country
- Uni
- State
- SC
- City
- Mauldin
Hello all,
First I wanted to give you guys a little background on myself. I am 27 years old and recently lost my mother to what was first diagnosed as an autoimmune disease ( it appeared to respond to treatment ) but then her condition worsened greatly and she passed away. Five days before her passing it was said that it was probably ALS. She passed seven months after she first noticed any form of weakness.
It is not clear if we have a gene that causes ALS in our family. My mom passed at 61 and I lost a fourth degree relative to ALS on her side of the family at 78. Of my mom's first, second, third, and fourth degree relatives on that side, of which there are 40 blood relatives ( my grandfather was one of nine kids ) there is only one other case of ALS and it was very late onset ( 78 ). Her father passed at 76 from lung cancer ( he had a mild form of parkinsonism ) and both of my grandfather's parents passed in there mid to late 80's with no neurological deficits.
I am still not entirely convinced what she had was ALS. I saw her IVIG treatments give her some function back. She went from being unable to raise her arm above her head in December to raising it over her head with no problems in January after treatment, then her function declined again and was regained to some extent after a treatment in early February. The EMG was "not entirely consistent" with ALS but we never got any specifics on what that meant.
I first started researching ALS when I was 18. At that time I had no family members with ALS, but I did have some muscle twitching and like many hypochondriacs I was worried about ALS. I went to a neurologist and didn't have anything abnormal come up on the exam It's been nearly 10 years and I still have some "thumping" twitches every now and again, especially after stretching. For a period, I didn't notice them at all until my mom got sick and of course anxiety fed into them I think.
I run a family business which has been very successful and I meet a lot of people every year. I want to do everything I can to help raise money to cure this disease that took the greatest mother anyone could ask for. My question is, what groups are donating the most towards research towards a cure?
First I wanted to give you guys a little background on myself. I am 27 years old and recently lost my mother to what was first diagnosed as an autoimmune disease ( it appeared to respond to treatment ) but then her condition worsened greatly and she passed away. Five days before her passing it was said that it was probably ALS. She passed seven months after she first noticed any form of weakness.
It is not clear if we have a gene that causes ALS in our family. My mom passed at 61 and I lost a fourth degree relative to ALS on her side of the family at 78. Of my mom's first, second, third, and fourth degree relatives on that side, of which there are 40 blood relatives ( my grandfather was one of nine kids ) there is only one other case of ALS and it was very late onset ( 78 ). Her father passed at 76 from lung cancer ( he had a mild form of parkinsonism ) and both of my grandfather's parents passed in there mid to late 80's with no neurological deficits.
I am still not entirely convinced what she had was ALS. I saw her IVIG treatments give her some function back. She went from being unable to raise her arm above her head in December to raising it over her head with no problems in January after treatment, then her function declined again and was regained to some extent after a treatment in early February. The EMG was "not entirely consistent" with ALS but we never got any specifics on what that meant.
I first started researching ALS when I was 18. At that time I had no family members with ALS, but I did have some muscle twitching and like many hypochondriacs I was worried about ALS. I went to a neurologist and didn't have anything abnormal come up on the exam It's been nearly 10 years and I still have some "thumping" twitches every now and again, especially after stretching. For a period, I didn't notice them at all until my mom got sick and of course anxiety fed into them I think.
I run a family business which has been very successful and I meet a lot of people every year. I want to do everything I can to help raise money to cure this disease that took the greatest mother anyone could ask for. My question is, what groups are donating the most towards research towards a cure?
