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Posted by: Jann ® 02/01/2012, 16:38:46 |
Over this past year, my symptoms began out of nowhere and have definitely gotten worse. It would be so encouraging to hear if anyone has gone into remission. On another post, one person was kind enough to write that she has been symptom-free for 5 years, which is awesome to hear. I would so appreciate hearing from anyone who actually came out of this horror show! If you did, under what circumstances? |
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Posted by: jethart ® 02/01/2012, 20:11:51 |
I don't know if you would call this a "remission", but my very first BEB symptoms (uncontrolled blinking when driving and riding in a car) occurred in 1999. They lasted for about 5 months and then stopped and remained invisible until 2002. I was never treated with anything during the 5 months of blinking. When the symptoms returned in late fall 2002, it was all over for me. No remissions since then. Joellen |
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Posted by: Anamarie ® 02/02/2012, 08:34:10 |
I think that there are many more in remission than are recognized. At the very first support group that I organized, there were two in remission. They did not come back to support group meetings because they no longer had a need for support. We always hear of those that are having difficulty. Those in remission kind of go away because they no longer have a need for the doctors, the BB or the Foundation. At times I go on my merry way living a "normal" life since BEB is no longer in my everyday thoughts and no longer an inconvenience. We (those of us in remission) are often scoffed at rather than listened to. When I mentioned to one individual that I thought my ideas should be shared, she walked away in a huff. To me, though my ideas may not work for everyone, I feel they should be shared. They may help only a few, but sharing certainly would not hurt anyone. Anamarie
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Posted by: In Indiana ® 02/02/2012, 10:16:29 |
Hi, Jann- Over the years, I've wondered how to go into remission as well. I've searched and searched for answers, and am still searching. Unfortunately, the spasms are still there for me (as well as my son), like most who are diagnosed. One blepharospasm case study presented that described a patient whose blepharospasms went away after B12 injections made me hopeful. I tried the injections, but unfortunately I didn't see any improvement regarding the spasms. You can find the link to the letter about this patient below:
I've wondered if low B12 levels may cause this problem in the first place for some. The damage from B12 deficiency is not always reversible, and it's made me wonder if this could be the situation for some with blepharospasm; that their B12 levels are low enough and hemocystine levels high enough to cause permanent damage to the nerves involved in the facial area.
There does definitely seem to be an immune response or allergic reaction involved with some who have blepharospasm, and they seem to do best avoiding the triggers or taking antihistimines. I don't think you can call their blepharospasm "cured" or "in remission", but they've found what works to control the symptoms, which is huge. Hopefully, someday soon there will be more promising news about getting blepharospasm in remission, or at least finding something that is an effective long-term treatment.
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Posted by: Jann ® 02/02/2012, 15:54:28 |
Yes, I also read about the case where someone was cured with B12 injections. I went to a nutritional consultant about 2 weeks ago who put me on B12 and magnesium amongst other supplements, however there has been no change in my symptoms as a result - unfortunately! I agree with AnaMarie's comment that the people who have gone into remission have very likely moved on, so there may be more of them than would be obvious on a site like this. I sure hope so! |
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Posted by: pdb ® 02/02/2012, 11:43:12 |
When I think of remission, I think of the condition where the symptoms go away without the sufferer having done anything to make it go away. I think that's different from what we might call various forms of "cure". If the condition is caused by external stimulants that are removed, to me that's not remission, that's a cure for a condition. The wiser of the medical gurus always say to investigate external issues (like dry eye causes) and eliminate them as the first step. We might argue that that's a process not followed diligently enough, or with a broad enough set of measures (wrong levels of stuff like potassium, B12 etc might be examples of things that could be more routinely tested). If those other issues are dealt with, the symptom, blepharospasm (small b, meaning not dystonia), goes away and the patient is cured, not in remission. Today we can reasonably say that, aside from some obvious problems with dry eye and so on, a patient who presents with symptoms of blepharospasm is usually assumed to have dystonia. When (assuming they do of course) they find a gene that's at the bottom of BEB, then perhaps by testing for the gene they will be able to differentiate better between those with BEB and those with eyelids out of control (blinkies or spasmmies) whose problem comes from other diseases or problems. If that were the case then hopefully those other causes could be treated and fixed. For those that then are properly identified as having BEB, meaning dystonia, my guess is that remission will be a rare thing. Peter Modified by pdb at Thu, Feb 02, 2012, 11:46:27 |
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Posted by: Anamarie ® 02/02/2012, 14:05:54 |
I guess in my case, I am 99% cured. I have had to work at finding the causes of my BEB. However, there is no question in my mind that I have BEB. Three rather significant doctors have agreed with the diagnosis and one of those did my limited myectomy back in 2003. Perhaps all three doctors were wrong but that would present a whole different set of problems including the possibility that many of us are incorrectly diagnosed. Something I would like to do: I could easily give myself a nasty case of spasms that I am sure that any doctor acquainted with the condition would diagnose as BEB and then walk into that same doctor's office a few days later completely "cured." Can't say that I would enjoy the day or so of misery but I would gladly do it to prove a point. Anamarie |
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Posted by: kaba ® 02/03/2012, 17:00:45 |
Hi, I asked my neurologist to test my B-12 and it came back completely normal. So that was not the cause or trigger for me. klara |
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Posted by: Possi ® 02/05/2012, 17:05:26 |
I considered myself in remission not needing injections for just over 2 1/2 years because of FL-41 lens! I have since had injections once about a year ago. I wish the same for all of you! Blessings.
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Posted by: Anita in Ohio ® 02/12/2012, 14:04:36 |
Received a phone call from a former BEBRF Area Rep. who now is in her 90's. She informed me that she was spasm free for 11 years, but unfortunately the spasms have returned. She was delighted to be spasm free, but now needed to return to botulinum toxin injections again and needed the name of a physician who could give her injections. She was grateful for having that many years without blepharospam, a form of focal dystonia. This brings me back to the BEBRF Founder Mattie Lou Koster, who often told me that we could be free of our spasms, but usually they would return. Anita Croce, North Central District Director, BEBRF
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