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Laurie Staller

Active member
Joined
Jul 8, 2010
Messages
48
Reason
Loved one DX
Diagnosis
07/2009
Country
CA
State
ontario
City
kitchener
Hi everyone.....just have a couple of questions since I last checked in. My sister's breathing has gotten worse, not only when she's awake, but at rest as well. She is not on any breathing aids at all. It seems to me that since she has been diagnosed, she is not a priority anymore.....we have such a hard time even getting her a puffer. In fact, she had an appointment in the London University hospital with one of the specialists, and they phoned and cancelled her appointment because they were too busy. Can you believe that? She has had many tests done, and nothing reallly shows anything concrete....whatever that means. At first, we thought the breathing issue was from anxiety, but she is on Ativan.....which has helped with the anxiety, but not the breathing issues. She has constant acid reflux, and is on Gaviston. She has tried other meds. for this, but nothing seems to help. She is having great difficulty speaking.....and also makes a contstant noise that comes from her throat. I don't know if this is caused from the acid reflux, or if the muscles are being affected that help her clear her throat...maybe that's what she's trying to do. As my sister is in denial, I can't talk to her about these things, so am hoping that maybe someone from the forum can make things a little clearer for me. I appreciate any information you may have...God Bless...Laurie
 
Laurie-
I am so sorry your sister is not getting the help she needs! You must be so frustrated. I'm sorry I don't have any answers for you. My husband's breathing is quite low, but he does not have any noise coming from his throat. He does have acid reflux, which I understand is common with ALS. The medication he takes does a pretty good job of helping with the reflux. I hope you sister gets some attention from the doctors soon. She does not deserve to be ignored!
 
My husband makes a noise constantly, too. His FVC is around 50%. I'm not sure if this has anything to do with it or not. His speech is quite bad, but he did fabulous on a swallow test a few weeks ago. He has no acid reflux as of now.
 
Laurie, please do not try to diagnose your sister's condition yourself. We live in a country that provides great healthcare. Take your sister to see another doctor and don't delay. Best of luck.
 
Stephie....thanks for your reply and your kind words. Could you please tell me what medication your husband is on for Acid Reflux. My sister has tried so many different drugs for this, but nothing really helps her. I'm so sorry you are going through this with your husband. Hugs to you both.....Laurie xo
 
Hi Missy.....thank you for replying. I really hate to sound clueless, but could you please explain what FVC is? There is so much that I still don't know. I'm so sorry you and your husband are going through this.....you are in my prayers....Laurie xo
 
Hi CJ.....could you please explain what "Strider" is? I am forever trying to learn all I can about this awful disease.
Thank you for your time......Laurie xo
 
Hi.....thank you for your reply. We've had my sister to two different doctors since her diagnosis in 2009.....a neurologist, and her family doctor. Neither one of them can explain what is causing these symptoms. I guess that is why we are trying to get to the bottom of this ourselves. We do however have another Doctor's app. this Friday, and whether or not he can tell us what's happening, we are going to insist on some type of puffer or NIV. At this point, I don't even need to know what's causing these awful symptoms....I just need a doctor that will take the time to help her manage them. God Bless.....Laurie xo
 
Laurie-
My husband takes Omeprazole. It is the only thing he has tried, but it works well. He did start out with a lower dose and the doctor increased it, but his reflux is much better since he started taking it.

Best of luck to you both. Your sister is lucky to have you!
 
Thanks CJ.....yes, that is definitely a possibility. She could have damage from the Acid Reflux and or the disease. This will be mentioned to the doctor. Thank you for your help.....Laurie xo
 
Hi Stephie.....thank you very much for that information. I don't know if Gwen has been on Omeprazole, as she has been on so many, but I will check it out. Thanks for your kindness.....God Bless.....Laurie xo
 
The Omeprazole is also available over the counter as Prilosec. If you have good insurance, get the script, otherwise go for Prilosec. $130 for script, about $25 for Prilosec.
 
Glen took Omeprazole also with good results.
 
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