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  • Anonymous
      Post count: 93172


      First let me say I am sorry for your losses. Your symptoms sound like you are in the worst possible way right now. But, if you are on the PTU’s you will begin to feel some better, mentally and physically soon. But, this is not a quick-fix disease. It will take a seemingly very long time to start to feel better, and even longer to actually be better, but it will happen. I am 2+ years post diagnosis and 1+ year post radiation treatment. Knowing the symptoms now I feel I must have had this disease for at least 8 years now. I also was told it was in my head, that I was a woman and was premenopausal, etc. etc. I have experienced much of what you have but I did not have a heart attack. I went into a-fib instead and am still be treated with with a very low dose of meds for it.

      You have come to the right place. The people here, both the posters and the facilitators will be there for you. It is very hard on family and friends – they just can’t seem to understand. We can become very weird with the way it effects us mentally. I was ostricized by family and friends in the beginning. They understand better now, but I just don’t go there with them. And it destroys friendships, so bring your concerns and questions here. Everyone understands and wants to help.

      I will keep you in my prayers.


        Post count: 93172

        Thanks for your help! It helps soooo much to talk to someone who understands! This board is truely a blessing! I also want to thank all of the people who are running this site and board! You are wonderful! This disease is so horrible and because people usually cannot tell we are sick just by looking at us, we don’t get a lot of support! I’ve been going NUTS! I am doing tons of research now but will continue to come here for emotional support! I’m finally getting sleepy so I’ll talk to you guys later! If I don’t go to bed now, I could be up another 3-4 hours – hyper at night!!!

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