stacey88
New member
- Joined
- Feb 4, 2024
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Brooklyn
Hi all,
Sorry to yet again post a separate message in this thread again, but my other forum posts are closed (see here for Part 1 and here for Part 2).
I last posted on September 9th. Eight months later, and no diagnosis yet. We've had three appointments with my husband's neurologist at Yale. He also had an additional EMG, which didn't show any significant changes since his previous EMG in August.
The neurologist at Yale attempted to again get my husband approved for IVIG through our insurance, which was denied after two appeals (including a peer-to-peer appeal). Despite the huge financial undertaking, we decided to move forward with the IVIG and pay out of pocket, as we saw this as a way to "test" whether he has a neuromuscular condition that is autoimmune related, or if he has something on the spectrum of MND. He just finished up his last round of IVIG 2 weeks ago. It's hard to say whether it's working or not... his pulmonary function and weight has remained stable, and we've seen improvements in his swallowing, but he still has issues with his speech. This is the biggest observable symptom he has, but I don't know how the muscle that has atrophied on his tongue can grow back, and I think that is how we would be able to observe a noticeable difference in his ability to speak clearly.
He also recently saw a neuro-ophthalmologist at Yale who did some extensive testing on his eyes as he has continued to have double vision. He also has a new symptom that started 1-2 months ago where his vision gets "stuck". After testing, the doctor said he has convergence insufficiency, which is a common vision problem that can be related to a neurological condition but can be totally unrelated as well. He also wants to observe my husband for several more months (6 months to be exact) to monitor the "stuck" vision, which he said could be ocular neuromyotonia, although that is rare.
The only other new symptom to report is some involuntary moaning that happens when he is sleeping.
Anyways... just thought I'd post an update here, as we still do not have a diagnosis, and maybe someone out there is familiar with these vision conditions and can give us any advice.
He has another EMG coming up, and another check-up with his neurologist next month.
Thanks for reading.
Sorry to yet again post a separate message in this thread again, but my other forum posts are closed (see here for Part 1 and here for Part 2).
I last posted on September 9th. Eight months later, and no diagnosis yet. We've had three appointments with my husband's neurologist at Yale. He also had an additional EMG, which didn't show any significant changes since his previous EMG in August.
The neurologist at Yale attempted to again get my husband approved for IVIG through our insurance, which was denied after two appeals (including a peer-to-peer appeal). Despite the huge financial undertaking, we decided to move forward with the IVIG and pay out of pocket, as we saw this as a way to "test" whether he has a neuromuscular condition that is autoimmune related, or if he has something on the spectrum of MND. He just finished up his last round of IVIG 2 weeks ago. It's hard to say whether it's working or not... his pulmonary function and weight has remained stable, and we've seen improvements in his swallowing, but he still has issues with his speech. This is the biggest observable symptom he has, but I don't know how the muscle that has atrophied on his tongue can grow back, and I think that is how we would be able to observe a noticeable difference in his ability to speak clearly.
He also recently saw a neuro-ophthalmologist at Yale who did some extensive testing on his eyes as he has continued to have double vision. He also has a new symptom that started 1-2 months ago where his vision gets "stuck". After testing, the doctor said he has convergence insufficiency, which is a common vision problem that can be related to a neurological condition but can be totally unrelated as well. He also wants to observe my husband for several more months (6 months to be exact) to monitor the "stuck" vision, which he said could be ocular neuromyotonia, although that is rare.
The only other new symptom to report is some involuntary moaning that happens when he is sleeping.
Anyways... just thought I'd post an update here, as we still do not have a diagnosis, and maybe someone out there is familiar with these vision conditions and can give us any advice.
He has another EMG coming up, and another check-up with his neurologist next month.
Thanks for reading.
