在线求助,求转发 @board
我朋友的视力现在正在急速衰退,左眼视野仅剩~10%,右眼~30%,且有严重的视神经萎缩。目前我的朋友在杜克大学就诊,但现在因为一直找不到病因,所以不知道接下来要怎么治疗。如果有朋友了解Johns Hopkins, Harvard, 或者 UPenn 的顶尖神经眼科专家推荐!请大家帮忙转发!

@board 病情与检查摘要:

进展:双眼进行性视野缺损及视物模糊。

免疫及脑脊液检查:腰穿结果(AQP4, MOG, GFAP, MBP, 及寡克隆区带 OCB)全部为阴性。

影像学:中美两次眼眶MRI(2月3日及2月25日)报告均提示轻度视神经炎/炎症,但目前主治医生对活动性炎症的判定存疑。

既往治疗:今年2月曾接受大剂量甲泼尼龙(Solu-Medrol)冲击治疗,视力有部分恢复但效果有限。

由于视力仍在恶化,且各项常规自身免疫抗体均为阴性(基因检测结果需等待6周),我们需要尽快获得第二诊疗意见(Second Opinion)。

如果您有认识上述顶尖医院(Wilmer, Mass Eye and Ear, UPenn)擅长处理疑难视神经病变(Optic Neuropathy)的医生,或者有类似求医经历,请留言或私信联系我,或者直接联系我的朋友 [email protected] 非常感谢!

@board 后续 1: Duke 团队给我的朋友提出了一种新的免疫治疗方案 IVIG。虽然我不知道是什么,但是算是个好消息。谢谢大家关心和支持,有别的后续我会继续更新的。万分感谢!
There is a common parasite that does something similar to mice, cats, and occasionally humans. I wonder why they haven’t ruled that out? Maybe it would have been visible on MRI, and the timeline doesn’t match that possibility.
@FiniteBanjo Can you please briefly teach me that what kinds of parasites will do this? My friend said she has never done any tests about parasites. Many Thanks!
Outbreaks of clinical toxoplasmosis in humans: five decades of personal experience, perspectives and lessons learned

The protozoan parasite Toxoplasma gondii has a worldwide distribution and a very wide host range, infecting most warm-blooded hosts. Approximately 30% of humanity is infected with T. gondii, but clinical toxoplasmosis is relatively infrequent. ...

PubMed Central (PMC)
@FiniteBanjo Thank you. I've let her know and she's drafting email to ask her doctor. Thank you so much and I really appreciate it.

@taco

不介意的话,建议也可以发Reddit,人多一点