Search found 14 matches

by amielzbth
Fri Feb 22, 2013 11:35 am
Forum: General Discussion
Topic: A-Typical Primary Progressive MS
Replies: 2
Views: 1832

A-Typical Primary Progressive MS

My husband has A-typical Primary Progressive MS. He still walks, but with crutches and is now on Gylenia. Anyone have any experience with A-typical MS? If so, what treatments have you been on?

Ami
by amielzbth
Thu Apr 01, 2010 5:47 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

RedPenguins: Thanks so much for your input and info. It really made me feel more at ease. Leon has his consultation on Tuesday (April 6). I can't be there because its at 2:30 and I have work so I'm more nervous. But, I have to work and make money and hope that it can help a little when Leon is on le...
by amielzbth
Thu Apr 01, 2010 1:01 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

Patientx: To be honest I don't know. I think he is going for the 14 day treatment and I think it might be the full dose as he keeps mentioning the immune system being taken away... It scares me so much to think about it. I've seen my grandmother go through it before she died of cancer and I've seen ...
by amielzbth
Thu Apr 01, 2010 9:32 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

Patientx: I've been reading the forums and some of them are uplifting while others are intimidating and scary. Leon is excited to do this, though, and since its "his disease", I can only support him and be there for him. As for me, I'm looking into real group therapy with actual live people specific...
by amielzbth
Thu Apr 01, 2010 8:07 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

The other Doctor who performs the chemo is named Dr. Susan Gauthier.

Here is her info: http://www.weillcornell.org/sagauthier/index.html
by amielzbth
Thu Apr 01, 2010 7:54 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

Actually, its Wiell Cornell....sorry! I'm about to find out the name of the guy as his neuro (Dr. Timothy Vartanian) just had the medical secretary send the referral for the chemo treatment.

Ami
by amielzbth
Thu Apr 01, 2010 7:32 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

According to my fiance, there's a doc who does it at NY Presbytirian (can't spell). He works with his Neuro. His Neuro doesn't agree with it, but Leon is pushing for it.

ami
by amielzbth
Thu Apr 01, 2010 6:13 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

Mostly likely in NYC.
by amielzbth
Thu Apr 01, 2010 5:47 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

Dr. Kerr has left Hopkins but they have a Dr. Harrison ...

Steven73:

Which John Hopkins are you taking about? Leon would be interested in knowing.

Thank You!
Ami
by amielzbth
Tue Mar 30, 2010 11:51 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13530

cyclophosphamide for MS

My fiance is probably going to end up doing this. Has anyone here done it? Or is this Hici the same thing? Please let me know the side effects as you experienced them. I just want him to be OK. He'll do it, but I need to be prepared for what's to come. He is getting sicker and I am so scared of losi...
by amielzbth
Tue Mar 09, 2010 12:04 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ameds - new clinic in Poland
Replies: 3
Views: 2728

Poland

Thanks for the info...
by amielzbth
Tue Jan 26, 2010 7:37 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Known Risks/Complications of Angioplasty and Venous Stenting
Replies: 129
Views: 111781

Coumadin

The stroke was not caused by the Coumadin; but once the bleed started, because she had Coumadin in her system, the bleed would not stop. She was already damaged by what may have been a lesion that weakened an artery. My fiance sent me the story. I'm still scared. He goes to a cardiaologist today in ...
by amielzbth
Mon Jan 25, 2010 10:32 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Known Risks/Complications of Angioplasty and Venous Stenting
Replies: 129
Views: 111781

Risks - I guess I should really have posted this here...

My main concern is whether or not my fiance will die after this surgery. I'll just be frank about that. I don't want him to die. I think that's a valid and justified emothion that I am allowed to have. I read somewhere that the blood thinners a young woman took after the surgery caused her to have a...
by amielzbth
Mon Jan 25, 2010 10:13 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI- just the facts, ma'am
Replies: 114
Views: 105791

The Blood thinners after the CCSVI surgery

My main concern is whether or not my fiance will die after this surgery. I'll just be frank about that. I don't want him to die. I think that's a valid and justified emothion that I am allowed to have. I read somewhere that the blood thinners a young woman took after the surgery caused her to have a...

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