Hello! 
Most of you know I have been completely blind for about a year and a half now. I don’t post here very often, although I do read the threads and posts, but something is happening to me at the moment that I wanted to share with you all and maybe discuss a little bit.
A couple of months ago, during a trip to London, I went to a neuro-opthamologist (among other docs) who told me that although my optic nerves are in a bad shape and my optic discs look pale, the nerves themselves have not completely atrophied. He went on to tell me that he’s never seen a person blinded by aps-optic neuritis with nerves that haven’t atrophied completely in such a long time (ischemia makes nerves atrophy really fast according to all my docs; they had told me from the start that within a maximum of six months the nerves should be completely atrophied). I didn’t know what to do with this information, nor did I know whether this was in any way important or not. I mean, I’ve been blind for a year and a half and whether my nerves are completely dead or not I’m still blind so really I had no idea how to process this and what importance to assign to it…
To make a long story shorter, since then some adjustments have been made to my blood thinning treatment that have helped tone down a really bad aps flare causing micro-clots and hypothalamic imbalance (which in turn meant a month of hyperpyrexia attacks, blood pressure spikes and a host of other wildly entertaining symptoms), but most of all a new course of treatment was recommended to me. A treatment that would not address the aps or lupus in any way (and I feel this can’t be emphasized enough; I am not saying this is a cure for anything), but that I was told had the chance to reverse some of the damage done to my optic nerves.
I am going to avoid being diplomatic about this and will just come right out and say it; I am talking about stem cells. Now hold your horses for a second while I explain! The stem cells I am referring to are NOT embryonic, fetal or from cord blood. They are adult stem cells taken from one’s OWN marrow and infused back to that person. The clinic and doctors that do this (in Europe) do NOT claim they can cure any autoimmune disorder with this treatment. They do however think that by giving me an iv infusion and retrobulbar injections of stem cells I might be able to regain some structure and function of the optic nerves.
I like to think that I am a pretty well adjusted and balanced person, but felt this was (perhaps) an opportunity I should explore, an avenue of treatment that sounded interesting to me. So I am at the moment being hospitalized for this, my stem cells have been harvested and I will have my infusions done tomorrow.
I feel it is important to explain why I have written this here. I am NOT in any way advertising the use of stem cells, I am NOT saying stem cells work and most of all I am NOT claiming that this medical procedure is not one that is highly experimental and wildly unproven at the moment. I also do not want to start an ethical debate (again, this is one’s own stem cells we’re talking about) regarding stem cell treatment, nor do I want to upset anyone. What I do want is to ask whether anyone on the boards with structural damage to their nerves (optic, acoustic, peripheral nervous system etc etc) from lupus or aps has ever had this treatment or considered this treatment or had a doctor recommend this treatment to them.
I apologize if my post offended anyone. That was certainly not my intention.
Zoi
Most of you know I have been completely blind for about a year and a half now. I don’t post here very often, although I do read the threads and posts, but something is happening to me at the moment that I wanted to share with you all and maybe discuss a little bit.
A couple of months ago, during a trip to London, I went to a neuro-opthamologist (among other docs) who told me that although my optic nerves are in a bad shape and my optic discs look pale, the nerves themselves have not completely atrophied. He went on to tell me that he’s never seen a person blinded by aps-optic neuritis with nerves that haven’t atrophied completely in such a long time (ischemia makes nerves atrophy really fast according to all my docs; they had told me from the start that within a maximum of six months the nerves should be completely atrophied). I didn’t know what to do with this information, nor did I know whether this was in any way important or not. I mean, I’ve been blind for a year and a half and whether my nerves are completely dead or not I’m still blind so really I had no idea how to process this and what importance to assign to it…
To make a long story shorter, since then some adjustments have been made to my blood thinning treatment that have helped tone down a really bad aps flare causing micro-clots and hypothalamic imbalance (which in turn meant a month of hyperpyrexia attacks, blood pressure spikes and a host of other wildly entertaining symptoms), but most of all a new course of treatment was recommended to me. A treatment that would not address the aps or lupus in any way (and I feel this can’t be emphasized enough; I am not saying this is a cure for anything), but that I was told had the chance to reverse some of the damage done to my optic nerves.
I am going to avoid being diplomatic about this and will just come right out and say it; I am talking about stem cells. Now hold your horses for a second while I explain! The stem cells I am referring to are NOT embryonic, fetal or from cord blood. They are adult stem cells taken from one’s OWN marrow and infused back to that person. The clinic and doctors that do this (in Europe) do NOT claim they can cure any autoimmune disorder with this treatment. They do however think that by giving me an iv infusion and retrobulbar injections of stem cells I might be able to regain some structure and function of the optic nerves.
I like to think that I am a pretty well adjusted and balanced person, but felt this was (perhaps) an opportunity I should explore, an avenue of treatment that sounded interesting to me. So I am at the moment being hospitalized for this, my stem cells have been harvested and I will have my infusions done tomorrow.
I feel it is important to explain why I have written this here. I am NOT in any way advertising the use of stem cells, I am NOT saying stem cells work and most of all I am NOT claiming that this medical procedure is not one that is highly experimental and wildly unproven at the moment. I also do not want to start an ethical debate (again, this is one’s own stem cells we’re talking about) regarding stem cell treatment, nor do I want to upset anyone. What I do want is to ask whether anyone on the boards with structural damage to their nerves (optic, acoustic, peripheral nervous system etc etc) from lupus or aps has ever had this treatment or considered this treatment or had a doctor recommend this treatment to them.
I apologize if my post offended anyone. That was certainly not my intention.
Zoi
