Had a good weekend after my short stay in the hospital its strange how just...

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  • Glad you're feeling somewhat better. Keep going and doing what you can.. Big hugs!!! Take care.

  • So hard to feel like the ones who are supposed to help you, aren't. I hope you continue to gain strength.

  • Keep your head up, that is all we can do and pray.

  • Most of the time I tell my doc what to do instead of them tellin me. When I need to up meds or taper off but they keep sendin me bills lol

  • it takes a special person to fight this damn illness, your one of us!!!!

  • Glad you are feeling better, one day is never the same as the other.

  • Tim, Remember 1 fact. Wayne has to research and know about ONE DISEASE. Your Drs have to know and research THOUSANDS OF DISEASES. Unless you go to a specialist who only treats Sarc, I have a BIG ADVANTAGE. If I am not sure, I tell you, "Go to your Dr." I have it very easy.

  • Tim ,r u staying in HFX or going home? Wayne is a true gem. He is correct,but he deserves all the credit x100. He and another friend have saved my life ,more than once. YES its true we do this on our own, but its ok. You will find a Dr that will support you once they see the results of you taking control,being more confident taking control of ur own treatments,decision making. I had the worse attitude thrown at me in hfx. When I started my treatment, but once the started seeding the drs involved from away AND it was working , even the most stubborn of all docs be,ame involved and pushed for ""outside" help. U have to know u,ur body,ur body"s reactions( u sound like you well on ur way to knowing and doing) the benefits of friends with sarc is experience,probabilities,likelihood etc . Wayne has a super brain with everything,he can make sure you get to know what you need to know. = confidence. It's a damn shame sarc changes its presentation as often as we change clothes sometimes. Remember that. It can,will go anywhere ,everywhere. Ever single person with sarc is 100% different. My sarc is crazy bad in many ways that is unheard of by most, as others have different things. That's what so cool about u and I meeting someone else with neurosarc. You know this....ur sarc is inssne. Don't let anyone ,especially a Dr dictate what's not" normAL" for sarc ,u know ur body best.