@sutherland1953
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 1 month ago
My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 1 month ago
My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up…[Read more]
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Charles Sutherland & Doris Sutherland (caregiver) posted an update 1 month, 2 weeks ago
Radicava ORS. We’re having so many problems getting the our Medicare advantage plan to approve it. Our doctor (neurologist) has done the Prior Authorization and submitted medical documentation, and two appeals that have been denied. He has ALS. I don’t understand. Can anyone share their experiences and positive outcome. It’s been heartbreaking.
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 2 months ago
Well, my husband didn’t want to reply. My husband first had symptoms in 1998. The doctors diagnosed him with spinal stenosis, pinched nerve, compression of spinal cord – cervical lamenectomy. This lead to three unnecessary surgeries. Fast forward to retirement in 2008, new location and new doctors – as weakness, balance and muscle loss pro…[Read more]
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Wow, Doris, your husband really went through a lot of misdiagnosis prior to his ALS diagnosis. That sounds dreadful and frustrating. It hasn’t been very long either. How are you both doing?
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Charles Sutherland & Doris Sutherland (caregiver) replied to the topic How do you describe ALS to friends and family? in the forum Living With ALS 2 months, 1 week ago
We just tell them I have an incurables disease call ALS. It causes muscle weakness. My brain and spinal cord signals are not in are not working as they should. There’s only treatment to slow the progress. And If you want to know more about ALS – just Google it. People will look at you so pitifully.
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Charles Sutherland & Doris Sutherland (caregiver) posted an update 2 months, 1 week ago
Radicava ORS denied for the second time due to not meeting Medicare criteria – FVC not greater than or equal to 80. I reached out to my doctor this morning. Are there any suggestions?
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Charles Sutherland & Doris Sutherland (caregiver) became a registered member 3 months, 1 week ago
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Hello Charles and Doris,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an e…[Read more]
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Hello Charles & Doris,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
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