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Hello Everyone, So it has been a month since the last infusion for Robert my boyfriend, poor thing he is so concern/scare with any new symptom that can cause a flare. I promised him i will ask you guys for guidance since doctors are not to helpful sometimes, this is the reason we are here right? Robert hands are very shaky and some times swollen as well as his legs, his breathing has improved a lot but not his speech, seems that his sinus is acting up and causing inflammation on all his mouth and cheeks, still nausea and vertiginous. unfortunately eating is becoming a problem due to the perforation of the palate. two weeks ago he feel so good that decides start excising, well after a week he feel so tire that could not get up of bed for 3 days sleeping thru day and night :( I don't think is time yet but he feels tire of feeling tired..a vicious circle...thank you all again for your inputs. Gabriela...

sorry for my spelling and English but my first language still Spanish..I m Mexican :)

woohoo go Trump!! sarcasm!!!!

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  • When someone has been so poorly as Robert has been, it is better to restart excercise slowly and build up each week. NHS choices have links to various exercise programmes , I will try and find the links. How is Robert progressing with his treatment?

  • Here's the link.. from NHS choices.. as I said before start slowly and build up nhs.uk/Livewell/fitness/Pag...

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