| Others with Respiratory Spasmodic Dysphonia |  | ||
| Archive | |||
|
Posted by: Mary Anderson ® 01/06/2003, 23:17:48 Author Profile Mail author |
Hi, I am new to this type of a support group but think this is great. I have respiratory spasmodic dysphonia or respiratory dystonia and was wondering if anyone else has this problem. I had built up an ammunity to Botx after having multipe injection for other affected area of dystonia. Since breathing was such a huge problem the only solution was a trach. That was 6 years ago. I had to find a new neurologist because he had not seen this before and did not believe that it exist. Before I left him he had me convienced that I was making it up, thank God for the U of WA or who knows where I would be today. Anyway I have an Intrathecal Baclofen pump and an arm load of other meds, is anyone have this and what are you doing to get help? Thank you. Mary |
| | Recommend | Alert | Previous | Next | Current page |
| Replies to this message |
| Re: Others with Respiratory Spasmodic Dysphonia | | ||
| Re: Others with Respiratory Spasmodic Dysphonia -- Mary Anderson | Top of Thread | Archive | |
|
Posted by: Frank Everhart ® 01/07/2003, 07:12:35 Author Profile Mail author |
Hi Mary, I was diegnosed w/ mixed Spasmodic Dysphonia in 1999. My speech kept getting verey slow and slured. I took speech therapy but never tried Botox. My air way whould go shut, I could exhaust air out but could not take air in. when this happens it may be for a short period of time or to the point of almost passing out. Well they told me it was a part of mixed spasmodic disphonia. I also had other problems w/my legs and alot of muscle spasams. Then in 2002 I was diagnosed w/ Primary laturel sclarosis and was told I did not have Spasmodic Dysphonia. It was talked about haveing a trach put in but thats as far as it went. I have went as long as 9 months and it not go shut and I have had it go shut as much as 4 times in one month. I take oral baclofen and also Diazapam, and klonopin all for spasticity and spasams. Dr. want me be tested for the pump, I'm not sold on it yet. Frank |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | Next | Current page |
| Re: Others with Respiratory Spasmodic Dysphonia | | ||
| Re: Re: Others with Respiratory Spasmodic Dysphonia -- Frank Everhart | Top of Thread | Archive | |
|
Posted by: Mary Anderson ® 01/07/2003, 16:55:19 Author Profile Mail author |
Hi Frank, I have to tell you that the pump has saved my life. The spasms in my leg had left me unable to waslk. I also have spasmin in my back, neck, and both arms. The pumps has helped my spasming so much. I still get break through spasms and I can not get the pump high enough without problems to control the respiratory spasms but I would not go with out it. I am now able to work 2 to 3 hours a day, which is great. You don't have the side effects of being tired and drugged out like you get with the oral meds. For me it was the best move I ever made. My respiratory dystonia is so bad that the spasms are almost continuious. My voice is not affected just my breathing. Thanks for writting back. Mary |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | Next | Current page |
| Re: Others with Respiratory Spasmodic Dysphonia | | ||
| Re: Re: Others with Respiratory Spasmodic Dysphonia -- Mary Anderson | Top of Thread | Archive | |
|
Posted by: Frank Everhart ® 01/08/2003, 10:39:57 Author Profile Mail author |
Hi Mary, If I may ask, what is causing all the spasams in the legs, back, arms and neck. Do you have another condition that is causing this? If so what is it called. Frank |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | Next | Current page |
| Re: Others with Respiratory Spasmodic Dysphonia | | ||
| Re: Re: Others with Respiratory Spasmodic Dysphonia -- Frank Everhart | Top of Thread | Archive | |
|
Posted by: mary anderson ® 01/09/2003, 21:46:43 Author Profile Mail author |
Hi Frank, It is dystonia all over. I had a head injury when I was young and it started in my face. It seems to show up in other parts each time I have an injury except in my vocal cords that was from when I was nursing I developed bacterial pneumonia and it triggered the respiratory dystonia. My neck and arms were from a second head injury, my legs were from fractures and sprains and who knows where my back came from. But life keeps moving on. Take care. Mary |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | | Current page |
| Re: Others with Respiratory Spasmodic Dysphonia | | ||
| Re: Others with Respiratory Spasmodic Dysphonia -- Mary Anderson | Top of Thread | Archive | |
|
Posted by: Teressa ® 01/08/2003, 20:55:50 Author Profile Mail author |
Hi Mary and others! I started with the Dystonia in 2000. They found that I have the diaphramatic, laryngeal and pharyngeal AB AD. I take the baclofen orally along with the neurontin. Recently I was tried on the Artane however that really screwed around with memory and such. I do get the spasms in the throat however lately it is controlled. I lost the ability to chew and swallow around 2001 and ended with a feeding tube which now is out and I am able to swallow pureed. Welcome to the board they are a great group along with the Dystonia board. God Bless Teressa |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | | Current page |