duplinwino
Distinguished member
- Joined
- Mar 14, 2007
- Messages
- 101
- Reason
- Loved one DX
- Diagnosis
- N/A
- Country
- US
- State
- NC
- City
- Pittsboro
I haven't been on in a while and I hope everyone is doing well. I appreciate the messages!
I'll try to make this short but my head is spinning after a new visit to a new ALS Clinic yesterday. A little background, DH was diagnosed with MND/atypical ALS early 2007. He has had a fairly slow progression, he is total care now as he is unable to move his limbs. We've been following with a local well known neurologist that I've known for over 12 years, works down the hall from me, it has just worked out for us to stay with him.
Well, it has gotten to the point that resources are hard to come by and we wanted to give the multidisciplinary team a try. Why we haven't before now is hard to explain but I digress.
After reviewing DH's records and examining him, he doesn't think he has ALS. His EMG in 2006 showed conduction block in two nerves which is atypical for ALS. He had brisk reflexes about a year ago but now has little to no reflex at all, which we know, ALS patients have brisk reflexes. He was 30 when diagnosed, not unheard of but very young. And he has little to no bulbar involvement at this point. He feels his picture better fits MMN.
This blood test was done back in 2006 and came back negative. This new doctor wants to send it off again, to a lab that specializes in this antibody (?) and it will be back in four weeks. He also wants to do another EMG to look for conduction block, though his nerves may be damaged at this point. We discussed IVIg.
He did a pulmonary function test with the nurse at check in and he wanted the respiratory therapist to redo it because it was so low. The RT comes in and yep, sure enough, his FVC is 40. His NIF is -58 (negative), normal 100-110 so he is now going to be placed on BiPAP.
My question is, does anyone have experience with this? His limbs are so wasted after almost 4 years of progression and his diaphragm weakened, if he does indeed have MMN, is IVIg going to benefit him? Other than maybe stop his progression?
I'm really looking for any and all insight here. Thanks so much!
Ashley
I'll try to make this short but my head is spinning after a new visit to a new ALS Clinic yesterday. A little background, DH was diagnosed with MND/atypical ALS early 2007. He has had a fairly slow progression, he is total care now as he is unable to move his limbs. We've been following with a local well known neurologist that I've known for over 12 years, works down the hall from me, it has just worked out for us to stay with him.
Well, it has gotten to the point that resources are hard to come by and we wanted to give the multidisciplinary team a try. Why we haven't before now is hard to explain but I digress.
After reviewing DH's records and examining him, he doesn't think he has ALS. His EMG in 2006 showed conduction block in two nerves which is atypical for ALS. He had brisk reflexes about a year ago but now has little to no reflex at all, which we know, ALS patients have brisk reflexes. He was 30 when diagnosed, not unheard of but very young. And he has little to no bulbar involvement at this point. He feels his picture better fits MMN.
This blood test was done back in 2006 and came back negative. This new doctor wants to send it off again, to a lab that specializes in this antibody (?) and it will be back in four weeks. He also wants to do another EMG to look for conduction block, though his nerves may be damaged at this point. We discussed IVIg.
He did a pulmonary function test with the nurse at check in and he wanted the respiratory therapist to redo it because it was so low. The RT comes in and yep, sure enough, his FVC is 40. His NIF is -58 (negative), normal 100-110 so he is now going to be placed on BiPAP.
My question is, does anyone have experience with this? His limbs are so wasted after almost 4 years of progression and his diaphragm weakened, if he does indeed have MMN, is IVIg going to benefit him? Other than maybe stop his progression?
I'm really looking for any and all insight here. Thanks so much!
Ashley