SZcat
New member
- Joined
- Sep 8, 2012
- Messages
- 7
- Reason
- Loved one DX
- Country
- US
- State
- MI
- City
- Detroit
Hello to the kind answerers.
I've read as much as I can of the stickies and advice as I can. I have some questions about ALS in the context of my significant other (SO) and I provide the family background of why I am here, as I wouldn't be here without the familial ALS.
Background: my SO and I have been together for 4 years.
His brother has had ALS for over 15 years, seemingly in remission of sorts, as he takes Rilutek (not sure I spelt that correctly). Seems some sort of cancer brought on the ALS. He's doing well and has certainly taken part in many studies. One wouldn't know he has ALS without looking at his hands.
2 years ago my S/O's father was also diagnosed with ALS, (shortly after surgery) and the same drug hasn't had the same results. His progression is alarming.
I too hate this disease and what its done to one family. With the possible genetic link, my SO has avoided surgeries (where he can in case he too develops ALS). Are there links to some sort of trauma bringing on ALS? Are we overreacting?
Recently we noticed my S/O legs are different in size, quite significantly so. We cannot determine if they have always been that way. We don't know if one leg is smaller or larger than the other. No muscle weakness, no clumsiness. From reading the other posts it would seem odd to have wasting without weakness. Regardless, due to the family history his PCP has recommended an EMG appt with his neurologist.
This has us both frightened, and of course we don't want to upset the family any further, everyone has enough to deal with.
Does any one have any thoughts? I know we have to wait and see what the EMG says, but in the meantime, I wondered if you had any insight or advice.
Without any genetic testing, are his odds 50-50 like I think they are?
Are their other symptoms we should be looking for?
Kind Regards
SZcat.
I've read as much as I can of the stickies and advice as I can. I have some questions about ALS in the context of my significant other (SO) and I provide the family background of why I am here, as I wouldn't be here without the familial ALS.
Background: my SO and I have been together for 4 years.
His brother has had ALS for over 15 years, seemingly in remission of sorts, as he takes Rilutek (not sure I spelt that correctly). Seems some sort of cancer brought on the ALS. He's doing well and has certainly taken part in many studies. One wouldn't know he has ALS without looking at his hands.
2 years ago my S/O's father was also diagnosed with ALS, (shortly after surgery) and the same drug hasn't had the same results. His progression is alarming.
I too hate this disease and what its done to one family. With the possible genetic link, my SO has avoided surgeries (where he can in case he too develops ALS). Are there links to some sort of trauma bringing on ALS? Are we overreacting?
Recently we noticed my S/O legs are different in size, quite significantly so. We cannot determine if they have always been that way. We don't know if one leg is smaller or larger than the other. No muscle weakness, no clumsiness. From reading the other posts it would seem odd to have wasting without weakness. Regardless, due to the family history his PCP has recommended an EMG appt with his neurologist.
This has us both frightened, and of course we don't want to upset the family any further, everyone has enough to deal with.
Does any one have any thoughts? I know we have to wait and see what the EMG says, but in the meantime, I wondered if you had any insight or advice.
Without any genetic testing, are his odds 50-50 like I think they are?
Are their other symptoms we should be looking for?
Kind Regards
SZcat.