Posted by: Linda Mott ®
06/16/2005, 16:11:47
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Welcome to the BB Nancy. I don't have any of the conditions that you have. I have ADSD & CD & have received 2 sets of Botox injections. I am sure there is someone that can answer your question re: reaction.
I am still educating myself on dystonia, I've had SD for 30+ years and CD for 16, but only correctly diagnosed in 2004. Best wishes,
Linda Cannon-Mott
ADSD/1973
CD/1989
B'ham, AL
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Posted by: Lynne ®
06/16/2005, 23:21:06
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Hi Nancy,Welcome to the bulletin board. Hang in there. Like you, I've also been diagnosed with Fibromyalgia and CFS. Breathing issues with SD might be other than asthma though. I'll write you off the BB, on that. Yes, there are many connections. Best wishes on your injections and treatment, Lynne (AD-SD; RLN surgery; PVFM - breathing; Northern Cal)
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Posted by: nmhenson ®
06/17/2005, 16:20:48
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Hi Lynn,Thanks for the reply and look forward to hearing from you via email. I had my 2nd injection today 10AM. Have not started having any breathiness as yet. They reduced the dosage from the last time. I neglected to write down the 2 dosages. I'll get that info next week from the therapist after I call in on the Botox line so they can record and analyze my voice after this latest injection. Had a different doc this time. He had trouble getting into the muscles. But it was tolerable - just took a little longer than the last time as he had to stop a few times. That's about it for now. Will be looking forward to hearing from you and comparing notes with our ME/CFS/FMS experiences. I've had them for over 20 years. Nancy
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Posted by: snowie ®
06/18/2005, 05:07:32
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Hi Nancy,I have Ab Sd, and was diagnosed with fibromyalgia a couple of months ago, and I also have asthma. It will be a delight to talk to some one who has similiar problems. Both Fibromyalgia and SD are muscles problems (and I know ME is classified in the same group as Fibromyalgia). I don't think there is any evidence to support this, that I know of, but then I am fairly new to being diagnosed with fibromyalgia and was only diagnosed with SD about 2 years ago. But I do wonder if there is a link between the disorders, or if some how we are more susceptible to them for some reason. I would very much like to find out more about this, and would like to hear what others think. Lynne is right, the complicatins with botox may not be as a result of the asthma, but it is possible that they are. This is some thing that you will need to get checked. Do you have Abductor or Adductor SD ? ... I'm sure when Lynne writes to you of the board she will exlpain more about this. I have Abductor SD and did find that my asthma was causing complications and was referred to the Chest Clinic here in England. I have had several botox shots that have caused me severe problems with breathing, and swallowing foods. My SD docotor is now leaving longer between the two injections that are given normally 2 weeks apart for Ab Sd. I now have a 6 week
gap between the two botox injections, and then about 3 months before I go back again. I also find that any chemicals, allergies, dust etc will aggrevate the difficulties I have, triggering my asthma which then effects my voice. So, this time of year brings it's own problelms with the hayfever season. It seems to be like a chain reaction. I also find I am constantly tired which is one of the most difficult things to deal with, along with the breathing difficulties. But I am lucky to be able to say that neither my SD or Asthma are severe, they are probably both mild to moderate, and so there are times when it isn't too bad, as it fluctuates, so I am thankful for that. I am in my late 30's and just hope they don't get worse as I get older. I look forward to chatting to you, I will send you an e-mail.
This board is a great place for information and support, I hope you find as much help and support here, as I have ... With best wishes,
Snowie
Ab Sd, London, UK
Modified by snowie at Mon, Jun 20, 2005, 06:04:25
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Posted by: nmhenson ®
06/20/2005, 10:12:00
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Hi Snowie,First let me say there are definite connections between CFS (ME) and Fibromyalgia. Here in the states, the majority of people who have been diagnosed with CFS also have Fibromyalgia. And recent data indicates that many people who are diagnosed with Fibromyalgia will eventually get CFS/ME. Research is sorely lacking so it will be a long time before we get firm data in this regard. I have Adductor Dysphonia so my injections are 3 months apart. I had my second injection Friday and they had reduced the dosage so I have not had any problems with coughing and gagging and choking while drinking or eating this time around. In fact, I've had almost no breathiness. So I'm not sure how well this injection "took." I have to call into the Botox line today to have my voice analyzed. I do need to address my asthma or whatever is going on with my primary care physician. I also probably need to see a specialist. There is one in our town who while being an active allergist and ENT, he also has CFS/ME. So that should be an interesting appointment when I get to it. I had two extensive back surgeries last year so I'm way behind in so many things. I feel like I will never get caught up. I'm having a very slow day and very tired so will say bye for now but looking forward to future chats on the board and any email. Nancy
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Posted by: SpecialDad ®
07/25/2005, 08:24:55
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I strayed here because I was wondering the same thing. My 9 year old son has a myelin insuficiency in his central brain. He recieved the abductor injections one month ago, after 36hrs with no complaint of illness he puked a day's worth of food, most relatively undigested and of a strange yellow color, diareha(sp?) followed into part of the next day.
From the day of the injections he became a changed child almost all in good ways. He was regaining the use of his legs which the tight abductors had taken away from him. He is putting on muscle at a tremendous rate and working very hard on his PT. So he is frequently complaining of being tired, and I think, more moody than before the shots. I fear the emergence of possible autistic tendencies.
Sincerely, Al R. founding member, Myelin-Mail@yahoogroups.com, a place for parents and professionals
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