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Posted by: noaharkrider ® 09/26/2008, 01:51:01 |
Hi I'm new...I need information concerning the respiratory type dystonia, or its blends in conjunction with other dystonias, such as laryngeal dystonia, or SD. I'm interested in finding out the quality of life to expect, what others go through, how they ... if its possible work ( I know there was a post about SD and employment, but I'm referring to the respiratory type cases.), how this type progresses, anything relevant... here's my email: noaharkrider@hotmail.com thanks, Noah |
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Posted by: ellie ® 09/26/2008, 10:58:15 |
My biggest complaint about SD is being breathy all the time. I don't do Botox because of this. My throat does not clamp off, but I am always short of breath(lung tests prove negative)and the more I talk the worse this becomes. If there is a type of respiratory dystonia, I would sure like to know it. I feel like there is something else going on besides the SD, but trying to explain it to ENT gets me nowhere. Noah, why do you call it respiratory dystonia? Ellie |
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Posted by: Hoarse Whisperer ® 09/29/2008, 18:41:25 |
I'm not familiar with the term "respiratory type dystonia", but it seems to be a recurring question. As I've described in previous posts, I have both Abductor Spasmodic Dysphonia (ABSD) and Vocal Chord Dysfunction (VCD), also known as Paradoxical Vocal Cord Motion (PVFM). The SD affects my voice, while the VCD affects my breathing. Many people with VCD are incorrectly diagnosed with asthma. The symptoms are the result of an abnormal closing of the vocal cords rather than inflammation of the airways, which causes asthma. It makes sense to me that VCD would be seen in some patients who suffer from SD – both abductor and adductor, as all the same muscles are involved. Like with SD, many different treatments options are used to help those with VCD. Botox injections and speech therapy help me. Most VCD cases are seen in conjunction with other medical issues. The various causes can include: upper respiratory infections, cortical injury, brainstem compression, conversion disorder, brainstem abnormalities, neurological disorders, cystic fibrosis, stroke, ALS, encephalopathy, GERD, and irritant or chemical exposure. Irritants such as ammonia, chlorine, cleaning chemicals, organic solvents, flux flames, and smoke have been linked to the onset of VCD. There is a lot of information on the Internet, especially research work performed by the National Jewish Health Center in Colorado (http://www.nationaljewish.org/disease%2Dinfo/diseases/vcd/). Lori
Related link: http://www.nationaljewish.org/disease%2Dinfo/diseases/vcd/ |
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Posted by: noaharkrider ® 10/11/2008, 03:33:35 |
I really don't know much but ...there apparently may be a respiratory type SD or VCD with SD from reading some of your posts and talking with the doc. I maybe should have phrased it differently...more appropriately...respiratory type sposmatic dysphonia was the term they used for diagnosis...
I suspect that there are a number of these but the difference in them being diagnosed is visiting a doc that has seen the respiratory types before and the other SD cases before. I think it also made a difference that the person who told us what was going on was supposedly one of the best but I didn't know that at the time. I was unable to respond to both posts before because I didn't feel like I knew enough about the illness to tell either way. Also it seems that the respiratory types can be put in 2 categories, but I'm really not so sure about this so someone should verify...those that get blockage by diaphragm, rib cage, etc muscles being affected...and the other group may or may not have that with more of a respiratory blockage up by the vocal chords. I don't really know much about anything about this so I can't tell you much. I have only very recently found out anything at all, but I can tell you its been a nightmare not having any kind of idea why I'd been sick. It's also been hard for relatives to believe that something was going on without having a name for it or a reason why...but since then I've realized those people that doubt you aren't worth being around or trying to convince.
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