Keeping secret

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Keeping secret

Postby CoralBelle » Tue Oct 15, 2013 1:32 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
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Re: Keeping secret

Postby lyndacarol » Tue Oct 15, 2013 5:17 pm

CoralBelle wrote: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

Welcome to ThisIsMS, CoralBelle. I understand your wish to keep your MS diagnosis secret. You have given modern medicine more than a fair chance! After recent reading, I encourage you to try a diet that eliminates wheat/gluten. I wish I had the answer for your pain problem; I don't have any tips to help your situation. But I wish you all the best; there are many members here who may have ideas for you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Keeping secret

Postby Cbridgeman » Tue Nov 26, 2013 7:51 pm

Hi, I decided early on that if my dx was ms that I would tell family but not tell work. I don't want to complicate the workplace with this, because, as you say, the biases in the world are very real. Good luck to you. God bless.
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Re: Keeping secret

Postby want2bike » Wed Nov 27, 2013 7:18 am

Lyndacarol is right. The only way to help chronic disease is with diet. Check out the diet section on this site. When you find the correct diet all your MS symptoms will go away. The drugs do more harm than good. Let Dr. Bergman explain the autoimmune problem. Follow his recommendation for two months and see if it doesn't work. The only thing you have to loose is your MS symptoms.

http://www.youtube.com/watch?v=zGmyUppmt-g
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