Hello, I need your help!

ello everyone!

I am so happy I finally got the time and opportunity to join this forum. I was hesitating for long time because I have never really used online forums before but this life situation made me change my mind. I am not diagnose with any disease but I am caregiver for my boyfriend. We met 3 years ago when everything was just fine, only last year he started to limp and first diagnosis doctor gave him was a torn ligament. So he was going to therapy and then some of therapist recognized there that it might be a nerve damage so he went to doctor again and then they didn’t really know what it is, they just gave him some steroids shots and schedule some blood work. Then another doctor said that “he was born like this and there is nothing he can do for him and that it’s genetic”. And he sent him home just like that , without deeper explanation or anything. My bf “took” this diagnosis very negatively. He would shut himself down completely, do not pick up phones, avoid contact with anybody and just stay in his room. I was trying to convince him to go to another doctor, keep telling him that this doctor certainly wasn’t a good doctor if he treats patients that way. So after few days he got hope that maybe I was right. After that he was trying to see another doctor but he got some problems with his insurance which took 3 months to solve. As time was passing by his leg would get slightly worse and he would start loosing balance and experience troubles going up and down on stairs. When we finally fixed the insurance and he got another visit with neurosurgeon that was the day of his life to be over according to my boyfriend mentality. That was about 2 months ago. Doctor knows it’s some kind of muscular dystrophy but till this day he can’t tell which type it is, He had MRI, couple of blood tests, EEG and some other tests which made the doctor ruled out some types of dystrophies. Now my bf is waiting for muscle biopsy which should cleared out his diagnosis hopefully.

This waiting time it’s killing me and him probably too. However it hurts me more because he said that he gave up partially so he doesn’t care to call for his appointments, getting referrals from his insurance. He is not on the top of it. This causes a lot of arguments between us because I can’t stand this situation. I see everyday how he struggles to walk, keep his balance. It really breaks my heart because I love him so much but I am unable to help him and I see that he is giving up on getting thing moving forward and getting some kind of treatment so hopefully he can get better at least for a while.

Its his personality which make it so hard. He was always very ambitious, had a plan for life, his career, he was doing great with school and work, He had great personality, everybody loved/loves him because he is very caring, polite and sociable and now he just got so depressed that it make me even more depressed. He was a very healthy, good looking, sociable guy with many plans and dreams and now he is saying that his life is over, and if he can’t do all these things he planned he doesn’t want to live. He is saying that first time in his life he doesn’t know what to do , what will happened…..

I am so scared for him, his life, his mental well-being. My heart just breaks to see how he changed, how life stopped had a meaning for him and our future too, He is rejecting me as a partner and possible caregiver.

I don’t know what to do, how to talk to him (I tried to talk million times), how to convince him for him to give his 100% to get properly diagnose and to receive a treatment. I really want to help him because he means everything to me.

I see that the time he is wasting , I see how this disease is progressing,,,,,swollen ankles, weakness in hands ,,,,he falls sometimes which terrifies me so much.

Please give me some advice, I will appreciate every respond.