laurenac81
Member
- Joined
- Nov 8, 2010
- Messages
- 24
- Reason
- Friend was DX
- Country
- US
- State
- OK
- City
- Oklahoma City
Janet had her first appointment today. He is pretty sure that she has ALS but wants her to have an EMG done before he will actuatlly confirm the diagnosis. He said that she is showing weakness in all of her limbs, some worse than others. The doctor did mention that she does seem to have symptoms of FTD, but he can't confirm because of the lack of communication from her. I am concerned about her inability to communicate because she doesn't tell us how she is feeling or gives us wrong information. For example, the doctor asked her if she was having problems swallowing and she said no, but she is and has choked on her food multiple times. So the concern is how will we know what care she will need to be seen or treated for if she can't tell us what is going on?
They also did a respiratory test on her and came up with the number 25. I'm not sure what that number means, but I think it is below the norm because they want her to have breathing equipment.
The doctor and nurse spoke to Janet about feeding tubes and a ventilator. John will talk to her about that to see what she wants. They explained that the time frame of getting these things is time sensitive because it is a surgical procedure and she have to be given narcotics which may lower her breathing and this could be very dangerous for her. I apologize if I am not using the correct terms it was a lot of information to take in.
The nurse also mentioned having someone come in for home health care to do an assessment and provide us with feedback.
They gave us a lot of good information, but the problem is that Janet was diagnosed with ALS in August and was just approved for disability. Her disability won't start until March and her Medicare not until February because of the 5 month time frame that she had to have been diagnosed. Because she does not have medical coverage right now the doctor was gracious enough to donate the EMG for her, but they are concerned about the breathing equipment because she needs it now. John is going to go to the Social Security office with her diagnosis to see if her coverage can start earlier. I really hope so. I am concerned with an increase in her breathing issues between now and February.
They also brought in someone from the MDA who gave us some information and provided us with paperwork to get her registered. She said that there is a $500 a year equipment fund that she can use if needed. I thought that was great. I feel really good about this doctor and they all were very helpful and provided us with their names and numbers so that we can call them just in case we have any questions.
I feel much better now that she has been seen by a specialist and will begin getting the care that she needs. I know this is difficult for her and my heart breaks for her. I can't imagine what she is going through. What can you say to comfort someone who gets this news or is it best to just be there to hug them and tell them you love them?
Thank you for reading through this post. I know it is a lot of information I just had to get it out and I am hoping for possible guidance.
They also did a respiratory test on her and came up with the number 25. I'm not sure what that number means, but I think it is below the norm because they want her to have breathing equipment.
The doctor and nurse spoke to Janet about feeding tubes and a ventilator. John will talk to her about that to see what she wants. They explained that the time frame of getting these things is time sensitive because it is a surgical procedure and she have to be given narcotics which may lower her breathing and this could be very dangerous for her. I apologize if I am not using the correct terms it was a lot of information to take in.
The nurse also mentioned having someone come in for home health care to do an assessment and provide us with feedback.
They gave us a lot of good information, but the problem is that Janet was diagnosed with ALS in August and was just approved for disability. Her disability won't start until March and her Medicare not until February because of the 5 month time frame that she had to have been diagnosed. Because she does not have medical coverage right now the doctor was gracious enough to donate the EMG for her, but they are concerned about the breathing equipment because she needs it now. John is going to go to the Social Security office with her diagnosis to see if her coverage can start earlier. I really hope so. I am concerned with an increase in her breathing issues between now and February.
They also brought in someone from the MDA who gave us some information and provided us with paperwork to get her registered. She said that there is a $500 a year equipment fund that she can use if needed. I thought that was great. I feel really good about this doctor and they all were very helpful and provided us with their names and numbers so that we can call them just in case we have any questions.
I feel much better now that she has been seen by a specialist and will begin getting the care that she needs. I know this is difficult for her and my heart breaks for her. I can't imagine what she is going through. What can you say to comfort someone who gets this news or is it best to just be there to hug them and tell them you love them?
Thank you for reading through this post. I know it is a lot of information I just had to get it out and I am hoping for possible guidance.