Posted by: Marilee ®
08/26/2005, 20:07:03
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Hello, Ellie. I empathize with you. I have shortness
of breath most of the time, except on rare days that I
can't explain. Since I am 68 yrs. old, my neuro put me
in the hospital for tests a couple of yrs. ago to make
sure it wasn't heart or lung problems - it wasn't.So she sent me to an otolaryngologist (ENT) to determine
if I have SD. He diagnosed me with both adductor
spasmodic dysphonia plus "paradoxical vocal fold motion"
(PVFM), which is a form of laryngeal dystonia, where
the vocal cords get in the way of your breathing
passages. You can look it up on the internet, and get
more info, to see if your sysmptoms fit. I get Botox injections in my vocal cords and it helps
a lot, but there are still bad days. Very few ENTs
know how to inject Botox in the larynx, but if you
can find a good one, you will probably get relief.
They usually work in conjection with a neurologist. We have discussed breathing on this b.b. quite a bit,
so you may want to look at some previous pages of
posting. Write any more questions or feelings you
have - we are here to help if we can!! Best wishes,
Marilee, Indiana
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Posted by: snowie ®
08/27/2005, 17:17:38
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Dear Ellie,You really need to go back to a doctor who specialises in ENT, SD, voice disorders. Not being able to breathe is a serious problem and you need to get some expert help. I had problems with my Ab Sd and breathing, I think this has been complicated by having asthma. We now leave longer gaps between the two botox injections that are given for Ab Sd normally 2 weeks apart, and that seems to be helping. You may find that once you have a definite diagnosis, if you're doc feels botox injections may help, the botox injections may help relieve the difficulty with breathing. But it is really inportant that you persevere with getting a definite diagnosis and then hopefully you'll get the medical attention that you need. If you can tell us where you are, somebody on the BB may know a doctor in your area that may be able to help if you feel too frustrated with the doctors you have already seen to feel you can go back to them with any confidence. Hang in there, I appreciate how hard it can be when you are having problems breathing as well as talking!. Please let us know how you get on, With best wishes, Snowie Ab Sd, London, UK
Modified by snowie at Sat, Aug 27, 2005, 17:23:37
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Posted by: krissie ®
08/29/2005, 14:56:13
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Hi Snowie, I have a problem with your post as I have had breathing/speech problems for 7 years. Spirometry readings are abnormal but no one has been able to help me as they have not seen anything like this before. So from my point of view it would appear that breathing problems are not serious.
I am in the UK.
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Posted by: snowie ®
08/29/2005, 15:17:22
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Hi Krissie,
I am sorry to hear that you have had breathing/speech problems for 7 years ... it's nice to see some one on the BB from UK. Where about's are you ? and what type of speech/breathing difficulties do you have ? ... ...In response to what you said in your post, is it that no one was able to help you as they didn't understand the problem, rather than it not being serious. Or is it perhaps you are able to manage with your breathing problems so you don't see it as serious. I would be interested to hear how you manage your breathing difficulties. In my view, breathing problems can be very serious, if you can't breathe than that can cause some serious difficulties surely. As somebody with Ab Sd and asthma, from my own experiences, when I have had problems breathing I have found that very serious for me. Maybe I should have qualified what I said in my earlier post, by saying that from my own experiences not being able to breathe has been a serious problem for me. All I can say is that I am glad that you are able to manage, if indeed you are, and I'd like to know more ... With kind regards, Snowie,
Ab Sd, London, UK
Modified by snowie at Mon, Aug 29, 2005, 16:46:41
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Posted by: krissie ®
08/30/2005, 03:04:38
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Hi Snowie, I am in the midlands. I have paradoxical vocal fold movement throughout the breathing cycle even when I am not speaking. I am not exhaling properly so this causes sooooo many problems. Someone suggested it was the CO2 levels. My oesphagus is affected as well so I go into spasm when I swallow food also..sigh.
Trying to speak with no airflow against a closed throat and contracted resp muscles is exhausting. I have been told I cannot have Botox due to the swallowing issues. I no longer see an ENT consultant. At the moment my neuro is trying meds with no luck to date due to side effects.
I get so worn out with this, my resp muscles ache all the time and I get really weak sometimes and just have to lie down.
Total nightmare.
Krissie
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Posted by: snowie ®
08/30/2005, 06:09:39
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Dear Krissie,You sound like you are having a really difficult time.... I am sorry to hear that. Have you tried contacting the UK Dystonia Association, I have their contact address if you haven't got it already. They are based here in London, they may know of a specialist that can help you, if PVFM is a form of dystonia (I'm not sure). You could also try doing a search for consultants in the UK that specialise in PVFM. I did that for some thing else and found a consultant that way. I am in London, please email me any time if I can be of any help. With best wishes, Snowie
Modified by snowie at Tue, Aug 30, 2005, 06:30:05
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Posted by: krissie ®
08/30/2005, 07:04:04
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Hi Snowie, I have been diagnosed with Dystonia but no one has been specific as to what type. There have been various opinions over the years but all different.
I have all the characteristics(sp)of SD (they initially diagnosed me with this) but with resp muscle involvement so that sort of throws things.
I have to limit my voice usage because of all the problems that occur if I talk for long periods. These are classic respiratory type symptoms and are awful.
I have actually been sat waiting to have Botox twice only to be turned away as something not quite the norm was seen during my pre Botox vocal examination.
I am quite up on ENT Consultants in the know in the UK but I hate to keep changing health provider services. I have had several over the years. Each time I get my hopes built up I get discharged..sob.Krissie
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Posted by: snowie ®
08/31/2005, 16:31:54
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Hi again Krissie,Awwwwww, I can hear the frustration and pain in what you say! .... I wish SD and other types of dystonia were more understood! ...I guess that's why it's so important that we get out there and tell people about it, and get doctors interested enough to do research, to find effective treatments and maybe a cure one day! ... But, at least we have this BB to be able to share our thoughts, and frustrations and try to offer suport and information to each other. Krissie, I would urge you to contact the Dystonia Society, if you are not already in contact with them (and any one else out there who needs some support in the UK). I am sure they would be able to offer some help in some way. There must be some thing that can be done to make things a bit easier for you. I have spoken to them on the phone before, and they were very helpful when I contacted them. They can be contacted at: The Dystonia Society
46-47 Britton Street
London, EC1M 5UJ
Tel: 020 7490 5671
Helpline: 08450 95 65 75 www.dystonia.org.uk
info@dystonia.org.uk Good luck, let me know how you get on, With many best wishes, Snowie
Ab Sd, London, UK
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Posted by: Audrey ®
08/30/2005, 03:12:26
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Hi Snowie,
Glad to see you on the BB again. Yes, you were right , when I spoke to you in London, I do have a voice problem, breathing problem and swollowing. Is that called SD ? I had my Botox
injections 3 Viales, 11 injections into the back of my neck, when I got home, although this was for my Cervical Dystonia and now I am suffering vey badly with breathing, swollowing and extreme pain across my shoulders and my neck.
I agree that Krissie should try and see another Specialist.Kind Regards, Audrey, Harare. Zimbabwe
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Posted by: snowie ®
08/30/2005, 04:42:57
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Dear Audrey,It's good to see you, but I am really sorry to hear that you are having such a bad time. Have you seen the post by Ricardo, re: anyone in CapeTown, South Africa? .... ... I will write to you off the BB, With many best wishes to you, Snowie
AB Sd, London, UK
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