- Joined
- May 29, 2021
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 03/2021
- Country
- CN
- State
- NC
Hello,
My mom was diagnosed with ALS in China last year in April. I joined the forum and posted a few questions at the time. I am grateful to those who responded and offered advices.
Despite of the sudden mental and physical break down during the initial coupe of months after her diagnosis, luckily she has been stable with relatively slow progression with help of additional medication for her anxiety. Now that travel restrictions has loosened and her condition still allows, she will be coming to US to spend a few months with me. It would be just too difficult for me to go back due to the strict quarantine requirements in China.
I plan to take her to an ALS clinic here for a consultation. Riluzole is her only medication for ALS. She is also taking Tudca that I sent over. I am not sure what I can expect from an consultation other than to review her medical record and EMG result, basically just to confirm her diagnosis and evaluate her progression since there is no cure and not much else we can do?
She’ll bring all her medication for a 3 months stay here. I will buy short term travel medical insurance for her just in case of other medical need. By visiting clinic here, I am hoping that at least the doctor can prescribed her Riluzole if she decides to stay longer. Or, if I want to buy sodium phenylbutyrate from Europe, I’d need US doctor’s prescription.
I live in Charlotte, NC. I am thinking to take her to Duke ALS clinic which is probably the most convenient location. Dr Richard Bedlack there seems to have established reputation.
I’d appreciate it very much if someone had similar experience to share, or can offer some advice on clinic recommendation as well as what to ask and expect at the consultation.
Sincerely,
Ting
My mom was diagnosed with ALS in China last year in April. I joined the forum and posted a few questions at the time. I am grateful to those who responded and offered advices.
Despite of the sudden mental and physical break down during the initial coupe of months after her diagnosis, luckily she has been stable with relatively slow progression with help of additional medication for her anxiety. Now that travel restrictions has loosened and her condition still allows, she will be coming to US to spend a few months with me. It would be just too difficult for me to go back due to the strict quarantine requirements in China.
I plan to take her to an ALS clinic here for a consultation. Riluzole is her only medication for ALS. She is also taking Tudca that I sent over. I am not sure what I can expect from an consultation other than to review her medical record and EMG result, basically just to confirm her diagnosis and evaluate her progression since there is no cure and not much else we can do?
She’ll bring all her medication for a 3 months stay here. I will buy short term travel medical insurance for her just in case of other medical need. By visiting clinic here, I am hoping that at least the doctor can prescribed her Riluzole if she decides to stay longer. Or, if I want to buy sodium phenylbutyrate from Europe, I’d need US doctor’s prescription.
I live in Charlotte, NC. I am thinking to take her to Duke ALS clinic which is probably the most convenient location. Dr Richard Bedlack there seems to have established reputation.
I’d appreciate it very much if someone had similar experience to share, or can offer some advice on clinic recommendation as well as what to ask and expect at the consultation.
Sincerely,
Ting