Re: Brynn's Update

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby TorCan » Thu Feb 18, 2010 7:11 am

Hello Brynn.

I have read your update and it sounds so amazing. I have symptoms that are very much the same as yourself and I am set to go to India for the treatment to be done on myself. The date will be March 26th when this will begin.

It is painfull for me to share my story with non MS'ers as they still try to suck the life out of this procedure and try to steal dreams that I have. It is thos epeople who say that "so and so said this or that" without any documentation at all.

I hope that other people feel what I am saying here.

Brynn, this is a very new treatment and your EDDS# was self assesed at 6.5 right? Well, I have done the same with myself and I have SPMS with the same number as you.

So rather then bass everything on "hearsay" meaning that I heard this or that, I am looking to hear from the people who have lived what I am going through and can shed some proper light on this.

From what I gather on this site is thatthe symptoms will subside over time? Am I thinking right here? I understand that because of the fact that I use a scooter to get around and that my eyesight has been messed up for 13 years will take a very long time to get better if it ever will. I understand that my MS symptoms will take time to get over so can the people who have had this treatment please talk to me about this. The dream stealers are making me depressed and having to defend all of my motives and goals with this treatment is such a drag, People say that they care and this is why they talk with me like this.

Brynn, my email address is I am looking forward to hearing from you as well as other patients that can help me with this. I was even told last night that this treatment would not work on progressive patients. Like this is something that I need to hear and this was told to me by a person that cares for me.

I need some feedback plese on this before I go crazy with defending myself.
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