MariaScan
New member
- Joined
- Jul 15, 2022
- Messages
- 4
- Reason
- Friend was DX
- Diagnosis
- 01/2022
- Country
- FI
Thank you for this helpful forum with lots of information and advice. I’ve been reading these discussions since autumn 2021 but this is my first message here. I’m sorry for my grammar mistakes. I am not native in English.
I am very worried about my friend. She noticed her first symptoms in February or March 2021 and got her ALS diagnosis in January 2022 after very thorough examinations. I was with her at the doctor’s appointment and had prepared to comfort her and stay with her for the rest of the day. To my surprise she told the doctor that she wouldn’t accept such a hopeless diagnosis (it was already a third opinion). To us friends she said that if anyone of us would suggest that the diagnosis might be right, it would mean the end of a friendship.
After that she has tried a lot of different diets, vitamines and alternative treatments. Some of them have helped her (f ex magnesium has reduced cramps which is wonderful) but others seem to be expensive, unhelpful and even possibly dangerous. She refuses to meet any of her neurologists and puts her hope and trust to this alternative doctor. In the beginning I thought that while this doctor might be wrong he would be sincere. Unfortunately I am beginning to doubt that. He gives her a new diagnosis every month and keeps promising that she will be able to participate a dance competition in a month. All this while her symptoms are worsening quickly.
I am particularly concerned about two things. First of course about my friend’s wellbeing. She would need a lot of help and it would be time to prepare for the future but she will not hear a word about it. I feel sad for her and for our friendship. We’ve been the best of friends for over 20 years. We’ve helped each other over hard times and we’ve always talked honestly about everything. Now ALS has changed it all and I don’t know what to do. Whatever I say I feel dishonest. So I don’t say much. I think that this is her life and her illness and she has the right to choose how she wants to handle it and we friends should respect that. Still, there would be so much help that would make her life easier if she would accept her diagnosis and meet her neurologist. She must be very very afraid, and that makes it impossible for her to even think about the possibility of ALS.
Anyone else been in a similar situation?
Maria
I am very worried about my friend. She noticed her first symptoms in February or March 2021 and got her ALS diagnosis in January 2022 after very thorough examinations. I was with her at the doctor’s appointment and had prepared to comfort her and stay with her for the rest of the day. To my surprise she told the doctor that she wouldn’t accept such a hopeless diagnosis (it was already a third opinion). To us friends she said that if anyone of us would suggest that the diagnosis might be right, it would mean the end of a friendship.
After that she has tried a lot of different diets, vitamines and alternative treatments. Some of them have helped her (f ex magnesium has reduced cramps which is wonderful) but others seem to be expensive, unhelpful and even possibly dangerous. She refuses to meet any of her neurologists and puts her hope and trust to this alternative doctor. In the beginning I thought that while this doctor might be wrong he would be sincere. Unfortunately I am beginning to doubt that. He gives her a new diagnosis every month and keeps promising that she will be able to participate a dance competition in a month. All this while her symptoms are worsening quickly.
I am particularly concerned about two things. First of course about my friend’s wellbeing. She would need a lot of help and it would be time to prepare for the future but she will not hear a word about it. I feel sad for her and for our friendship. We’ve been the best of friends for over 20 years. We’ve helped each other over hard times and we’ve always talked honestly about everything. Now ALS has changed it all and I don’t know what to do. Whatever I say I feel dishonest. So I don’t say much. I think that this is her life and her illness and she has the right to choose how she wants to handle it and we friends should respect that. Still, there would be so much help that would make her life easier if she would accept her diagnosis and meet her neurologist. She must be very very afraid, and that makes it impossible for her to even think about the possibility of ALS.
Anyone else been in a similar situation?
Maria