Posted by: Delaine Inman ®
12/17/2002, 11:08:14
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My neurologist and I discussed it yesterday and she said she could see where it could make the botox spread into the muscle and nerve cells. She was interested in learning more. The other doctor who responded and knows Nancy's doctor felt confident Nancy's doctor knew what he was doing and trusted that he was competent to try things with patients who had not responded well to Botox.
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Posted by: Jeannie Day ®
12/17/2002, 21:35:52
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Mary, it was nice that your neurologist replied by e-mail. The only thing that concerns me about his reply was when he said he had never heard about it and then made a comment. Just because a doctor has never heard about it being used this way doesn't mean that it can't be. That's what research is all about. REMEMBER the history of penicillin? Bread mold!!!! Maybe Albumin is the answer-- maybe not. Who knows?
Jeannie
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Posted by: Nancy MacDonald ®
12/18/2002, 11:07:09
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That's too bad he is not willing to find out about it. Albumin is in Botox already. He just added more to the shot. My other doctor said he used Albumen on Balemia and other eating disorders because it is a binding substance that helps it stick.Good luck.. Nancy in Massachusetts with my eyes open since October 31st. and loving every moment of it. That is also what I wish for you.
Happy Holidays
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Posted by: Kathy in Oregon ®
12/20/2002, 09:17:35
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Bulimia is an extreme eating disorder , nancy, that is a binge and purge method of overindulging oneself started by the ancient Romans. How does albumin have anything to do with is??
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Posted by: Nancy MacDonald ®
12/21/2002, 20:25:40
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You are right. My doctor said he uses it for the medicine he prescribes for eating disorders. It must bind or whatever it needs to in that situation
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Posted by: gayle register ®
12/20/2002, 11:57:15
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Nancy, it is great to read that you have been "open" for this length of time. Do you know the dose that your DR gives to you ?
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Posted by: Nancy MacDonald ®
12/21/2002, 20:24:01
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No I am sorry I don't. But I will for sure check it next time.Good luck to you
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Posted by: Tim Johnson-PA-USA ®
12/18/2002, 15:04:10
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I have been noticing lots of posts about albumin, protein and Botox, with questions about whether Botox has been changed and if so, how. Also, claims have been made about great success by using more Albumin on ONE patient, and many now have soaring hopes. According to the May 2000 BEBRF newsletter, Question #5, in order to reduce development of antibodies from using Botox, "the new batch of Botox that has been out since December 1999 is a lower protein form of botulinum toxin A. It is theorized that lower protein may lead to lower rates of antibody formation." Is this protein the same as albumin? Has the "new batch" been "watered down" so it is not as effective as before 1999? Regardless of the answer to these questions, I would caution all of us blephros to not get our hopes up too high just yet until further studies are done on a large number of patients over a long period of time to prove the issues in question. We all know how one thing works for one patient maybe for a short while, and then it doesn't work again for that same patient. I have had that happen far too many times with many things I have tried over the past 12 years to jump to conclusions over one injection result. What are the adverse affects of increased protein in Botox today if there were problems before 1999?? Where is the documentation? We all know that what works for one may not work for somebody else. This is even true of Botox, even before 1999, in my own experience, and for many others. I know we all want the "cure", and I pray it comes soon, but I just don't want everybody to get way up and possibly have hopes dashed needlessly. Dealing with this BEB/Meige is hard enough.Tim of PA who has been nonfunctional every day for more than a year.
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Posted by: Delaine Inman ®
12/18/2002, 15:21:30
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What you say is very true, especially what works for one may not work for another or even for the same person twice. One of the reasons I love this BB is that when something does work for one person, it does give us hope that it might work for one more........one, even if is someone else is something to celebrate and be excited for that one. I am from a Nursing/science background and am well aware of the importance of double blind studies and research, but we all know a dozen things that have worked for someone and research didn't have to prove that it worked or why it worked, it just did for some. Hope and courage to try new and different things, some which will work for one or some, it doesn't matter. I will not sit around waiting for the "proof" if I am nonfunctional or struggling to live my live. What have we got to lose if we are nonfunctional......I'll be the first one to try anything that worked for one person.
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Posted by: Ann Doyle ®
12/19/2002, 09:15:32
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I am not trying to be funny. I really would like an answer to "non functional"--what is it? For me , when I just going from the davenport to the bed is non-functional. Also both eyes are closed but I can use a finger to open one for a second. What does it mean to others?
--modified by Ann Doyle at Thu, Dec 19, 2002, 09:18:38
Modified by at Thu, Dec 19, 2002, 09:18:38
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Posted by: Delaine Inman ®
12/19/2002, 10:50:09
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To me it is when the BEB dictatates and controls everything because my eyes are closed and I am miserable(emotionally and physically) and exhausted. Don't want to see anyone or anyone to see me and nothing helps. I am functionally blind and nonfunctional as a person to carry on with life.
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Posted by: Kathy in Oregon ®
12/20/2002, 09:26:27
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Actually, Delaine , you are so very right. The physical aspects we forget lead to this emotional non-functionality and we have to remind ourselves of why we are so tired and after having a bad eye day or days , that it is alright to admit you are not emotionally capable of dealing with anything other than resting and trying to regain the strength to go on.
Another reason this support group is soooo Important!
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Posted by: Ann Doyle ®
12/23/2002, 14:01:35
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I'm glad you said something Delaine,,I would have missed your post Ann Doyle
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Posted by: Kathy in Oregon ®
12/20/2002, 09:21:30
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Ann, i would pretty much think that you have described the meaning of nonfunctional!!
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Posted by: Shanasy in IL ®
12/20/2002, 00:08:41
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Excuse me for disagreeing but it bothers me to hear "don't get your hopes up too high". I LOVE to have my hopes up high - man it feels good - even if I am disappointed later - it was worth the good feeling I had. To me, saying "don't get your hopes up" is kinda like saying don't fall too much in love because you might get hurt in the end. Imagine never falling in love for fear of being hurt. In fact, look what getting everyone's hopes up has done; many physicians across the country are now looking into what albumin can do or not do for us. This has created such a wonderful ripple effect! And I really agree with Delaine in that even if it only helped 1 or 2 of us - how wonderful could that be!!!! I'm with Delaine in that if it worked for someone else - I'm sure going to se if it might work for me - at least look into it! So I say - everybody KEEP your hopes up and if the albumin thing doesn't work - who knows what other discovery might come out of all this? At least it keeps the doctors thinking (as if they don't already have enough to think about! lol!)Shanasy - Riding high on hopes
--modified by Shanasy in IL at Fri, Dec 20, 2002, 00:16:58
Modified by at Fri, Dec 20, 2002, 00:16:58
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Posted by: Dee in OR ®
12/20/2002, 11:40:07
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I'm with you Shanasy! Without high hopes, we have nothing. Here's to hope, DeeOR
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