heartbroken
I am heartbroken from reading this…… Who has the power to say if you are too sick or not sick enough??????? My doctors didn’t want to treat me with IVIG because I was not sick enough. The years passed on and I lost feeling in my hands, feet and the pain has gotten unbearable at times. I have been sick for 8 years now and just started getting IVIG. I was only given IVIG because 1 neuro out of 12 said he didn’t want me to get “sick enough for treatment” meaning that he didn’t want me to end up in a wheelchair. I have 2 little girls, ages 4 and 2 of whom I have missed so much of their lives because of this damn disease! I have had 3 IVIG treatments since January. The first one made me feel like Super Woman. THe next 2, didn’t really do much. Now my doctor wants to go back to conventional mediications of which I have been on them all without any relief. I too was on steroids and I became viscious. Along with the normal neurontin, lyrica, cymbalta, savella, etc….. None have worked. The only hope that I hold on to is that I one day will feel the way I did after my first treatment. My neuro said that if the next IVIG doesn’t work, he is out of ideas??? What does that mean??? How can he be out of ideas/treatments??????? I am 34 for Gods Sake!!! I want to see my children grow up. I am tired of living on morphine, but that is all that they can give me know inbetween treatments.
God, I am sitting here crying for you. My heart goes out to you, your partner and all those who help you. I pray you make it to your SCT. And I am not a person whjo prays, but Ken, I am praying for you………
heartbroken
I am heartbroken from reading this…… Who has the power to say if you are too sick or not sick enough??????? My doctors didn’t want to treat me with IVIG because I was not sick enough. The years passed on and I lost feeling in my hands, feet and the pain has gotten unbearable at times. I have been sick for 8 years now and just started getting IVIG. I was only given IVIG because 1 neuro out of 12 said he didn’t want me to get “sick enough for treatment” meaning that he didn’t want me to end up in a wheelchair. I have 2 little girls, ages 4 and 2 of whom I have missed so much of their lives because of this damn disease! I have had 3 IVIG treatments since January. The first one made me feel like Super Woman. THe next 2, didn’t really do much. Now my doctor wants to go back to conventional mediications of which I have been on them all without any relief. I too was on steroids and I became viscious. Along with the normal neurontin, lyrica, cymbalta, savella, etc….. None have worked. The only hope that I hold on to is that I one day will feel the way I did after my first treatment. My neuro said that if the next IVIG doesn’t work, he is out of ideas??? What does that mean??? How can he be out of ideas/treatments??????? I am 34 for Gods Sake!!! I want to see my children grow up. I am tired of living on morphine, but that is all that they can give me know inbetween treatments.
God, I am sitting here crying for you. My heart goes out to you, your partner and all those who help you. I pray you make it to your SCT. And I am not a person whjo prays, but Ken, I am praying for you………