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Discussion Starter · #1 ·
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
 

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Hi Zoi,

I know next to nothing about this but would just like to wish you the very best of luck.

Huge hugs :grouphug2:

Katharine
 

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Zoi,
I have not personally had this treatment but well done you for being so brave and going for it ,I wish you loads of luck and success.I can't say what I would do in your situation but as I am going blind ,I think I would want to preserve the optic nerves as much as I could too.As I understand it,there are many promising research projects going on regarding curing blindness.Scientists may be able to do this in the future but they cannot if the optic nerve is atrophied,that is ,I think,why they are saying to you how important it is to try and preserve the optic nerves.Good luck with it and keep us posted!
Julsie
 

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Zoi:

All I Can say is may you be blessed with great results...without though you may have given us all hope that some of the "bad" things may be fixed by our own bodies.


I will keep you in my prayers.

Stephanie
 

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trailblazer

Go for it, I would. You must try and do what is best for you and your health.. you can be a 'trailblazer'. I wish you all the best and hope you get a good outcome. Let us know either way...;)
 

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HI Zoi,

So good to read your post and hear how you are, I think about you often and wonder how you are.

I'm very interested to read about this and I wish you all the luck in the world. You deserve some positives with your help now and I hope this is the new foundation of some better sight.

I was upset last week after going to Opthalmology Docs in London again and told I have billateral Holmes Adie pupils (just an annoyance) but also right sided evidence of a relative afferent pupillary defect which the doc said was evidence of previous optic neuritis. Now, whilst I have 90% vision remaining, for which I am grateful, I am also aware that once the lupus/aps has 'attacked' somewhere, it can and most likely, will attack there again. .. . ..

Please let us know how it all goes,
love Cathy x
 

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Dear Zoi

All the best as ever ! Thanks for letting us know about this new therapy.
I am so glad you have been able to try it. I wonder when the results will be apparent.

Love and hugs
Clare
 

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Dear Zoi

You most certainly havent upset or offended anybody :) I am delighted that you have the opportunity to try out this new treatment. If I were in your shoes I would be doing exactly the same thing:)

Im excited and nervous for you, all at the same time :hug:

I too wonder when you might expect to 'see' some results? How wonderful it would be to regain even part of your sight :hug:

Best of luck for tomorrow!

Luv n stuff
Joan:rose:
 

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Good luck Zoi :luck: I think it's fantastic you have been offered a chance like this. Given your situation who wouldn't want to try it! No offense was created , as the old saying goes walk a mile in my shoes ;)

love
Lily
 

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Zoi,
I don't know anything about this but I know that being blind is hard as I did do in home health care before lupus. I will say a prayer for you and hope that things work out well for you. Let us know how things are going.
 

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Discussion Starter · #12 ·
Hello! Thank you all so much for your incredibly kind words and good wishes. :)

Cathy I am so sorry to hear about your vision loss and RAPD.... :( I had RAPD too for about year before going blind; it is indeed evidence of damage to the afferent pathway, i.e. to the optic nerves. You're right, lupus and aps do tend to strike the same places and because organ damage tends to be cummulative, it's incredibly important to achieve good disease control in order to stop lupus or aps from doing any more damage... I hope the optic neuritis decides to stay miles and miles away from you for a long, long time (maybe 200 years or so?!)! :blush:

Now from what the doctors explained to me there is no "set" time-frame for results and different patients have wildly different experiences with regards to this treatment. They did mention MS patients with peripheral nervous system damage usually take a week or two to show any improvement (if improvement does occur of course), but also said macular degeneration patients can have visible improvement in their visual acuity within half an hour from treatment (and in theory the improvement can continue for 4-5 months following the infusion).

They've never treated anyone with optic nerve damage before though and so they don't really know how my eyes will react (assuming they'll react at all). :rolleyes:

They did do a number of baseline tests though this morning including visual evoked potentials (as a baseline as they don't yield any results in the absence of light perception) and a quick eye exam where they checked for pupil responses to light and visualized the front of my optic nerves; these will be re-done tomorrow evening an hour after the infusion (right before I leave for the airport to go home!) and in about a week's time in Greece and we'll take it from there!

Zoi
 

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(((Zoi)))

I am so happy that you have an opportunity to help your eyes.:)

You are in my thoughts and prayers that you will see good results from this.

Love,
Lyn
 

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Dear Zoi,

I too am happy that you may have a chance to save your optic nerves.

I would never be offended by the use of one's own stem cells as that procedure and chemo saved my husbands life (hubby had nonhodkins lyphoma).

I will keep you in my thoughts and prayers.

With best wishes for better health, TAB
 

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Hi Zoi,
Positive thoughts, prayers, and wishes for you when this is done. I think it is absolutely marvelous that there is this opportunity for you! Nothing ventured, nothing gained. Perhaps not for you, but without trying, you would never know and always have the question. YOU GO GIRL! Doctors are learning from us on how to proceed with treatment. Sometimes we have to be the one who blazes the trail for others to come after. I admire you for having the courage to try this. Unknown tho it is.

Safe travels for you. I would be afraid to try to travel so soon after having it done.
Sally
 

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Zoi

Just want to wish you all the luck and to congratulate you on your inoffensive eloquence.

May you be well, may you be happy with the results.

Nicky
 

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Zoi

I really hope that the treatment helps you. I have had optic neuritis and I found it very scary, I was blind in one eye for some time. I think you are very brave for trying this new treatment. Thank you for letting us know about it. I hope it works for you. Please let us know.

Deb
 

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Dearest Zoi, There is nothing on earth that would delight me more than you getting better sight. I really hope this happens for you. I have a friend with Retinitis Pigmentosa, she is Registered Blind and her Son aged 9 is losing his sight. I know she would consider such a treatment if offered. There has been some talk about it for R. P. but I don't know how far the process has developed.

The way I view it any improvement you get makes it worthwhile. I hope the infusions etc. are not unpleasant.
x Lola
 
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