Keeping secret
Posted: Tue Oct 15, 2013 12:32 pm
Hi all. I'm new to the forum, don't know where to start. I have been diagnosed almost 15 yrs. I am 66, a grandma to 14 grand kids who live nearby, my family is a close loving, doing things together family. I am still on my feet, but walking is getting js harder especially steps. I am trying to keep my diagnosis I secret from all but family. A person in our circle of friends had bad MS, strapped in wheelchair, had to be fed, could not be understood,create a huge bias and expectation about MS in my world. I don't want all to expect the same and pity and treat me as if mentally handicapped.
I have been on every med available with adverse effects, CCSVI raised blood pressure, Avonex, depression, Copaxone huge red hot itching welts, Tysabri, joint pain, Tecfidera, nausea, stomach pains. I don't want to try any others that offer only a chance that it may hold back symptoms. I work with a pain clinic and take low dose morphine daily and Percocet for break through pain. It helps some, but pain from misuse of limbs and back not helped by pain meds. Physical therapy helps some, but if would like help from others. What , if anything do you do to ease pain and discomfort when an exacerbation
comes on? I consider my MS progressive because I am never symptom free. I have been having Solumedrol infusions about twice a year and it used to help with energy but is helping less now. I am not working so on most days I can stay off my feet, which helps, but on busy days I can really be set back. I have not been on any other forums and I am just wondering if anyone has tips or helps to share? CoralBelle
I have been on every med available with adverse effects, CCSVI raised blood pressure, Avonex, depression, Copaxone huge red hot itching welts, Tysabri, joint pain, Tecfidera, nausea, stomach pains. I don't want to try any others that offer only a chance that it may hold back symptoms. I work with a pain clinic and take low dose morphine daily and Percocet for break through pain. It helps some, but pain from misuse of limbs and back not helped by pain meds. Physical therapy helps some, but if would like help from others. What , if anything do you do to ease pain and discomfort when an exacerbation
comes on? I consider my MS progressive because I am never symptom free. I have been having Solumedrol infusions about twice a year and it used to help with energy but is helping less now. I am not working so on most days I can stay off my feet, which helps, but on busy days I can really be set back. I have not been on any other forums and I am just wondering if anyone has tips or helps to share? CoralBelle