Posted by: ClaireW ®
01/06/2003, 02:17:19
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I think this is an area where "they" are are making an educated guess. It is quite possible that BEB/Dystonia could be caused in SOME PEOPLE by an autoimmune reaction, and certainly several poeple here on the board have thyroid disease which is an autoimmune problem. Also in the UK they are doing research looking for abnormal "anti basal ganglia antibodies" in some Dystonia patients..not all. I think it is just one of many possible causes. I had ANA testing done. IT WAS NEGATIVE!.
As to medication...I have been taking Levodopa..which helped me...but have stopped taking for the moment it becuase I started having odd side effects, raised blood pressure, milk production, bad temper!! I know my neuro says that even though meds help symptoms..the side effects may not be worth it for some people. It's an individual decision for everybody.
Best Wishes,
Claire..who has sore infected eyes at the moment...
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Posted by: Delaine Inman ®
01/06/2003, 09:26:18
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Well it wouldn't surprise me, but I don't think I've ever heard any doctor say that about BEB. Sure would like to know how this person treats BEB and more about the blood test. Can you get us more info? Klonopin usually has an anti-anxiety quality. But some people react the opposite to any drug. Also it could just be lowering your inhibitions so you are not stuffing your feelings. At any rate there are many other types of medications. I think Shirley posted a link a few days ago on that. Welcome Newbe.
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Posted by: Ann Doyle ®
01/06/2003, 09:33:24
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Dorothy, I take 1 mg. klonopin 4 times a day and it really works well sometimes. For side effect, I take Zoloft. Seems like I always need a maximum ammount of drugs for them to work and for some reason that always embasrrasses me--like I'm a complainer or big baby or something.. I take 90 units Botox every 3 months but if I could find a Dr in driving distance that would give them every 8 weeks, I would go.
Shirley, you get them every 8 weeks , do you have any suggestions? Actually I used to make my appts every 10 weeks and now this last time for 9 weeks. He hasn't noticed. I also wish I could get more. Last time he said he did increase it but I forgot to ask him to what. Ann Doyle
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 09:55:14
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Ann, many doctors will give the injections every 8 weeks. I'm sorry but my brain is mush this morning and I'm not exactly sure what you are asking me for suggestions about. You can only do what your doctor is willing to do. Sometimes all that is being done is all that can be done. At times, surgery is indicated but not always by any means. We are all just trying to find the best quality of life that we can.Shirley in Arkansas
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Posted by: Shirley-Arkansas-USA ®
01/06/2003, 09:49:41
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Hi Dorothy
I'm in agreement with Claire and Delaine and think that an autoimmune deficiency is probably one in a number of suspect problems that might contribute to symptoms of Blepharospasm developing.
I also think that a number of us do have a compromised immune system and have had some quirky unexplained health problems going on for some time. Anna was talking about having run a low grade fever for a prolonged period of time and that hits home with me as I've had the same thing occur with me over the past 20 years or so. A temperature of 99 to 100 off and on for months at a time. It's not that my normal temperature runs higher-I feel bad when it is elevated and feel like I have fever. Anyway, it screams "auto-immune" problems to me. I've never been able to get a diagnosis for this though.
I've also had an ANA run and the results were normal.
The doctor's comment might have just been his opinion on a cause and what he suspects in numerous cases but it certainly hasn't been confirmed to be an autoimmune problem.People react differently to medications and it appears that Klonopin is not the drug for you. There are other medications that you could try that might not have this negative effect on you. Ask your doctor if you can try something else at a very low dose. There are different classifications of drugs that could be tried but even a drug in the same classification would be worth a try as it might be that little tiny difference will work well for you. Let us know how you do. I hope that things improve for you. Shirley in Arkansas
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Posted by: ClaireW ® 
01/06/2003, 10:11:07
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That's interesting about the temperature..mine tends to be on the low side for long periods of time...often 35 celsius...can't do the conversion to F..sorry!I do know that 35 is the point at which you are considered hypothermic. We are all so similar..and so different!
Claire
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Posted by: Delaine Inman ®
01/06/2003, 10:15:10
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My temperature has always been lower than "NORMAL". When I had 98.6 I felt feverish and sick.
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Posted by: ClaireW ®
01/06/2003, 10:25:29
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Snap...I can go to the Docs with a "normal" temp..and know that I have a fever..it's hard to convince them!
Claire
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