p******h
发帖数: 577 | 1 下面是我的国内一个朋友发给我的情况，不知道有没有这方面的建议可以提供？
另外，我如果想咨询医生的话，该去那里问？ 多谢。
下面是我一个朋友给我发的。我在美国不太认识学医的，只好发到这里来。
如果，有那位朋友，有这方面的消息，请告知。
刚巧昨天我们去了上海，跑了两家知名医院，其中一家就是华山，那个专家王毅说我妻
的病是视神经脊髓炎（NMO)，而非多发性硬化(MS)，以往两
者的界限比较模糊，
如今已明确，建议使用半年的环孢素A和大剂量的维生素C，β-1a干扰素只对预防多发
性硬化复发有用，对预防视神经脊髓炎复发没什么实际意义。
而且β-1a干扰素（利比）价格极其昂贵，自费药。我妻已经过了急性发作期，正在逐
步恢复中，最近刚开始注射此药，听了他一番话，又有点迷惘。
另一家同济医院与宁波的诊断基本相同，说不管是多发性硬化还是视神经脊髓炎，治疗
和预防方法几乎一样，还是建议用干扰素。你方便的话帮我问问，在美国此两种疾病分
别用何种方法预防？ | f******I
发帖数: 769 | 2
devic's disease is thought to be a variant of multiple sclerosis but it's
quite distinct and is treated differently; devic's affect spinal cord but
not the brain as in multiple sclerosis,
we'd had a patient with this disease and she is slowly dying, we've been
treating her with plasmapheresis,
in the states the expert is dr. wingerchuck in mayo clinic in scottsdale,
arizona,
let me know if you want to know more details
【在 p******h 的大作中提到】
: 下面是我的国内一个朋友发给我的情况，不知道有没有这方面的建议可以提供？
: 另外，我如果想咨询医生的话，该去那里问？ 多谢。
: 下面是我一个朋友给我发的。我在美国不太认识学医的，只好发到这里来。
: 如果，有那位朋友，有这方面的消息，请告知。
: 刚巧昨天我们去了上海，跑了两家知名医院，其中一家就是华山，那个专家王毅说我妻
: 的病是视神经脊髓炎（NMO)，而非多发性硬化(MS)，以往两
: 者的界限比较模糊，
: 如今已明确，建议使用半年的环孢素A和大剂量的维生素C，β-1a干扰素只对预防多发
: 性硬化复发有用，对预防视神经脊髓炎复发没什么实际意义。
: 而且β-1a干扰素（利比）价格极其昂贵，自费药。我妻已经过了急性发作期，正在逐
| a**e
发帖数: 5094 | 3 currently people think devic disease and multiple sclerosis are differnt
diseases. Devic disease has the anti-aquaporine4 antibody, while MS has anti
-BMP antibody. If you want to make the definate diagnosis, send the CSF
sample to Mayo clinic, Rochester. The treatment is slightly different,
Plasmophoreiss works better in devic disease.
【在 p******h 的大作中提到】
: 下面是我的国内一个朋友发给我的情况，不知道有没有这方面的建议可以提供？
: 另外，我如果想咨询医生的话，该去那里问？ 多谢。
: 下面是我一个朋友给我发的。我在美国不太认识学医的，只好发到这里来。
: 如果，有那位朋友，有这方面的消息，请告知。
: 刚巧昨天我们去了上海，跑了两家知名医院，其中一家就是华山，那个专家王毅说我妻
: 的病是视神经脊髓炎（NMO)，而非多发性硬化(MS)，以往两
: 者的界限比较模糊，
: 如今已明确，建议使用半年的环孢素A和大剂量的维生素C，β-1a干扰素只对预防多发
: 性硬化复发有用，对预防视神经脊髓炎复发没什么实际意义。
: 而且β-1a干扰素（利比）价格极其昂贵，自费药。我妻已经过了急性发作期，正在逐
| p******h
发帖数: 577 | 4 Thank you very much. Now I send your guys' message to my friend. Maybe I
will first ask him to send a CSF report to certain place to make sure which
disease. Then, we can talk about something else. | p******h
发帖数: 577 | 5 腺苷脱氨酶 0.50U/L 葡萄糖4.03mmol/L 氯129mmol/L 微量蛋白607.30mg/L
这是我朋友夫人的CSF 报告，我不知道是不是这个东西？ 他们非常想确切的知道到底是
哪个病？
anti
【在 a**e 的大作中提到】
: currently people think devic disease and multiple sclerosis are differnt
: diseases. Devic disease has the anti-aquaporine4 antibody, while MS has anti
: -BMP antibody. If you want to make the definate diagnosis, send the CSF
: sample to Mayo clinic, Rochester. The treatment is slightly different,
: Plasmophoreiss works better in devic disease.
| p******h
发帖数: 577 | 6 CSF常规检查：潘氏试验（+） 红细胞计数40个/ul 白细胞计数17个/ul 中性粒细胞比
例10% 淋巴粒细胞90%
底是
【在 p******h 的大作中提到】
: 腺苷脱氨酶 0.50U/L 葡萄糖4.03mmol/L 氯129mmol/L 微量蛋白607.30mg/L
: 这是我朋友夫人的CSF 报告，我不知道是不是这个东西？ 他们非常想确切的知道到底是
: 哪个病？
:
: anti
| p******h
发帖数: 577 | 7 另外请问一下，plasmapheresis 是什么？
【在 p******h 的大作中提到】
: CSF常规检查：潘氏试验（+） 红细胞计数40个/ul 白细胞计数17个/ul 中性粒细胞比
: 例10% 淋巴粒细胞90%
:
: 底是
| f******I
发帖数: 769 | 8
anti
for multiple sclerosis, i don't think those anti-myelin antibody means a
whole lot, MS is diagnosed clinically, and elevated antibody titier does not
increase the risk for MS from clinically isolated syndrome, unless there is
some new development,
for MS there is increased monoclonal band on csf,
devic's disease the main features distiniguish it from MS is the spare of
brain, where in MS the brain MR and spinal MR were abnormal, but in NMO the
brain MRI is often normal; also when you look
【在 a**e 的大作中提到】
: currently people think devic disease and multiple sclerosis are differnt
: diseases. Devic disease has the anti-aquaporine4 antibody, while MS has anti
: -BMP antibody. If you want to make the definate diagnosis, send the CSF
: sample to Mayo clinic, Rochester. The treatment is slightly different,
: Plasmophoreiss works better in devic disease.
| f******I
发帖数: 769 | 9
plasma exchange, it is done through a large centrally placed catheter, kind
of like dialysis where your plasma is filtered out and is replaced with
albumin, in the process you could get hypotensive and hypocalemic, it's used
to treat ofr variety of diseases including devic's and GBS and such, if you
ask me it's kind of voo-doo medicine,
【在 p******h 的大作中提到】
: 另外请问一下，plasmapheresis 是什么？
| b******8
发帖数: 24 | 10 The NMO is recognized as a distinct CNC inflammatory demyelinating disease
now. The revised diagnostic criteria for definite neuromyelitis optica (NMO)
, proposed by Mayo clinic, require optic neuritis, myelitis, and at least
two of three supportive criteria: MRI evidence of a contiguous spinal cord
lesion 3 or more segments in length, onset brain MRI nondiagnostic for
multiple sclerosis, or NMO-IgG seropositivity. But there is varied forms of
the NMO too.
The treatment for the NMO included, | b******8
发帖数: 24 | 11 The test for the NMO-IgG( anti aquaporin-4, AQP4) used the blood sample, not
the CSF.
anti
【在 a**e 的大作中提到】
: currently people think devic disease and multiple sclerosis are differnt
: diseases. Devic disease has the anti-aquaporine4 antibody, while MS has anti
: -BMP antibody. If you want to make the definate diagnosis, send the CSF
: sample to Mayo clinic, Rochester. The treatment is slightly different,
: Plasmophoreiss works better in devic disease.
|
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