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Atypical Laryngeal Dystonia Can Cause Breathing Difficulties
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Posted by: June Floyd ®
06/27/2004, 20:22:27
Carol posted these 2 items on the Blepharospasm bb and I suggested she post them on the Dystonia and SD boards (I'm doing this for her) - hope you find them interesting. You can read the complete 2 posts dated June 26 on the Blepharospasm bb.

June in Toronto (beb/meige)


"Last night, on one of my many internet searches, I finally found a medical article that describes a "respiratory-type laryngeal dystonia" that affects mostly breathing, and not so much the voice. Only 1-2% of laryngeal dystonia cases are this type. It is also treated with Botox, in higher doses than for the typical laryngeal dystonia.

I have included the link.

I have an appointment with an ENT voice specialist, but not until September, so I hope I can keep breathing until then."


Related link: http://www.bgsm.edu/voice/paradoxical.html

----------------

"I am including a link to a site that gives a very detailed description of how to breathe to minimize the closing of the larynx (bottom of page 4 of the site). Not everything this site says about dystonia seems accurate, but the breathing description is right on."

Related link: http://cantbreathesuspectvcd.com/page4.html




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Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties
Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties -- June Floyd Top of thread Archive
Posted by: Lynne Martinez ®
06/27/2004, 22:33:58
Hi June,

We discuss this periodically on this BB (see some of the threads with words like "asthma" or "respiratory" in the topic line) but it's always good to re-visit as newer people may have missed the past information.

I have a very complex, disabling manifestation of SD affecting my breathing. AKA "Vocal Cord Dysfunction," "Paradoxical Vocal Fold Movement," "Respiratory Adductor Laryngeal Dystonia," "laryngospasms," "laryngeal collapse." Ad infinitum.

As if SD wasn't distressing enough, adding the breathing difficulties (which may be "atypical," but are not uncommon for people with laryngeal problems) to vocal difficulties makes things extremely challenging. One of the sites you provided is from Dr. Koufman, who is skilled in this specialized area (that website helped me diagnose myself a year ago also).

Unfortunately, many ENT's (unless a patient goes to a world-class expert, such as a few of the specialists who have presented at SD symposiums) and pulmonologists mistake the symptoms of this syndrome with asthma. Unlike asthma, this syndrome has nothing to do with the lungs. PFT's (Pulmonary Function Tests) will show up as normal even though a patient is struggling to breathe.

The poster from the BEB Board may want to review our Archives for previous threads on this subject. I'll contact her. Appears we have much in common.

Thanks,
--Lynne (AD-SD; Northern California)




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Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties
Re: Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties -- Lynne Martinez Top of thread Archive
Posted by: June Floyd ®
06/28/2004, 12:28:48
Thank you, Lynne - I'm sure Carol would be pleased to hear from you - perhaps on the Blepharospasm bb as she hasn't registered for this one or the dystonia bb - that's why I posted the links for her. Take care

June in Toronto




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Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties
Re: Re: Atypical Laryngeal Dystonia Can Cause Breathing Difficulties -- June Floyd Top of thread Archive
Posted by: Lynne Martinez ®
06/28/2004, 14:02:59
June (and anyone else who may be helped by this info),

I'll contact Carol on the BEB Board as I'm registered there also (have mild bleph) however make sure she knows that she, and anyone, can access the SD-BB Archives (which could provide valuable information for her - or give her patient contacts) without being registered. She only needs to be registered to "post."

Also, people with "Atypical Laryngeal Dystonia" (that is my "exact diagnosis" BTW - in addition to a more complex breathing diagnosis) are welcome on the SD-BB. Patients don't have to have "typical (pure) laryngeal dystonia" to post here even though many BB participants do have the pure form of SD.

Many of us have complex vocal cases which impact various functions of the larynx (including breathing, cardio, swallowing, etc.). Hope Carol decides to join us as she may more likely find others who share her laryngeal syndrome here rather than on the BEB-BB.

Thanks for being an advocate for a fellow dystonia patient.

--Lynne (AD-SD; Northern California)




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