Posted by: The Godfather ®
06/20/2007, 20:30:33
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Hello Snowie,
I'm sorry to hear about your dystonia hand issues. I hope you can get good results from the Botox. Keep us posted.
I have to ask, could you describe what the symptoms of your hand/arm are? I might have something going on with my right hand that I am noticing. Every now and then if I'm doing something with my left hand, I'll notice my right hand pointer finger and thumb is rigid and extended. I don't know if it's just a habit I'm developing or the beginning of something? It's not bothering me, but it doesnt look/feel right. Like you, I'm still young (45) and hope I have a long way to go too!
Raymond
AD/SD (presently breathy!.... still!!! but coping)
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Posted by: snowie ®
06/21/2007, 14:48:40
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Hi Raymond / Paula,Thanks for your replies, they are appreciated. Raymond - did you say when you use your left hand the thumb and forefinger of the right hand extends, thats strange, but then, nothing would suprise me any more with Dystonia. Interestingly enough the problem is in my right hand (and I am right-handed) and the Doctor yesterday said the 'dystonic movements' seem to be in my thumb and forefinger, giving me difficulties with writing. The thumb presses down, and the forefinger wants to lift away by itself from the pen. And when I hold my hand flat, palm upwards, the fingers curl in, of their own accord towards my palm and the elbow tucks in. The doctor thinks the problem with my arm is that its compensating for the muscle contractions in the hand. If you want to chat more about it please feel free to email me.
Meanwhile, It may be worth getting your hand checked if you notice it continues or gets worse. I have just turned 41 .... the SD started in my early 30's. Ah well ....... c'est la vie ! Take care, Snowie, AB SD, London, UK debbie.skerrett@ntlworld.com
Modified by snowie at Thu, Jun 21, 2007, 14:51:18
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Posted by: The Godfather ®
06/22/2007, 10:53:30
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Hi Snowie,
After reading the other posts here, one thing in common is the thumb and index finger. That is what I am noticing also on my right hand.
An example of what I am noticing is.... Say I was carrying a heavy pail of water with my left hand, my right hand thumb and index finger get rigid while the other fingers curl into the palm. Like I'm pointing with my thumb sticking out. Weird huh? I'm hoping it's just a habit that I'm just now noticing. The good news is it doesn't bother me with daily life. The next time I see my Dr. I'll "point" it out to him! HA HA.
I'll drop you an email soon, I'm just so busy with other things.
Raymond
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Posted by: Paula B ®
06/20/2007, 21:03:57
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Snowie,I wish you the best that life can offer. You are right, what we have is not terminal, and life does go on, with or without SD. Take one day at a time and hope and pray for the best. Sometimes it seems that things get worse before they get better. Take Care, Paula
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Posted by: Mary Bifaro ®
06/21/2007, 17:03:38
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Dear Snowie,We all wish you the best. You have a great attitude and that will carry you far. It's hard to understand why problems sometimes get more complicated. I join the others here in wishing you good results with the treatment you have selected.
Remember, Snowie, that you are not alone and that you are not dystonia. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Speed Racer ®
06/21/2007, 19:08:59
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Hi Snowie, It's been a long time huh?...I just happened to meet a guy today and started to chat with him, noticed his SD, I think it's AB version like ours. Anyway, what are the chances of that? Upon discussion, he mentioned his is index finger and thumb have started trembling too...He has been thinking he has Parkinson's, because he has not run into a Dr. that knew what we SD is, but I gave him this link...and links to Doctor's "in the know" at UTSW here in the states so he can consider botox.
Sorry to hear it may be spreading in you, my fingers tremble sometimes, but I traced it to my blood pressure med for sure. When I don't take it, the slight trebling stops. By the way for those of you that have not heard from me in a while, my last injection lasted 6 months of good voice. I stay on my knees at night for a while ya' know. Best wishes, Speed
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Posted by: Hoarse Whisperer ®
06/21/2007, 22:46:16
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Dear Speed,Six months of great voice is terrific, especially for someone with AB. Do you get unilateral or bilateral injections? What dose? I used to see Dr. Sinard at UTSW, then went to Dr. Stasney in Houston when Dr. Sinard moved to Vanderbilt. Recently I saw Dr. Shultz at UTSW. I've had two Botox injections, but have never really received much improvement in my voice, though it has helped breathing spasms tremendously. Has voice therapy been any benefit to you or helped the Botox last longer? Any insight into your success would be most appreciated. Thanks! Lori
AB/SD since 2003
DFW Texas
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Posted by: Speed Racer ®
06/26/2007, 20:41:08
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Hi Lori,I'm experimenting with unilateral injections with Dr. Shults, please feel free to contact me at speed64racer@sbcglobal.net...I'll fill you in on all my details to try to help and give you all I know and have experienced recently. This last shot lasted the longest, but it was a big dose. I've only had three in the last couple years. Rob
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Posted by: the breathless wonder ®
06/21/2007, 20:23:34
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Dear Snowie,My heart goes out to you. I understand your worry and fears. I have had the same fears. If this helps, 9 years ago I had back problems and was diagnosed with back arthritis. I was devastated as I was too young (47) to have this problem. Guess what. I was not immune from disabilities. Well, time passed, I stopped obssessing about it, learned to manage the symptoms and life went on. For each of these experiences of loss we suffer, we eventually adjust to change and learn acceptance. In the process we become stronger. Later when I was diagnosed with the SD I looked back to that other loss and knew I could adjust to SD as well though it would be more life altering. The courage and resolve was there from my past experience and I had only to draw from it and know that I could make it through. Life is a series of adjustments and all of us will develop issues throughout our lifetime. It is important to deal with one issue at a time and not let it overwhelm you with all the things that could and might happen. You have survived SD and you will survive the hand dystonia. Draw upon those past strengths. As Mary said you are not alone. We are in this all together. My thoughts go with you and I know you will be alright and make it through. Your friend, Concetta
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Posted by: Maria ®
06/24/2007, 14:10:15
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Hi Snowie,I'm sorry to hear that your dystonia has spread. And I'm sorry to say that I might be in the same situation. I have been on homeopathy for 1 1/2 years, which has been a real roller-coster when it comes to voice. Somtimes having an almost perfect voice for 2-10 days, sometimes not having a voice at all. I got a high dose of a new remedy two months ago. Gave me a good voice for 7 days, a couple of weeks after the dose. BUT then I lost it and got really hoarse.
One morning I woke up having spasms in my neck. Another morning I woke up with pain in my right hand. I've had the pain (sort of weakness and contraction) in my right hand for about 2-3 weeks now. After vacuuming or using a hammer I get tremor and contraction in my index finger. It's so sad. I wasn't able to get an appointment with my homeopath when I first noticed the spreading dystonia, but I have an appointment on Tuesday. I fear that it might be too late to reverse the process and undo the damage. Paradoxically my voice is different from what it was before the dose. If I talk in a soft and completely relaxed way my voice is just a litte tight and hoarse with more tremor than before, but hardly no spasms at all. Go figure! But I don't think I will continue with homeopathy. It is said to be gentle and safe healing modality (and some people don't react very much to it at all), but it can also twist your system in strange ways. I also feel young (39 years old) and I've had AB SD since I was 17-18.
I guess we'll have to find a way to live with this too... Maria in Scandinavia
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