Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I am going through a tough time.
I take steroids to keep moving. Without them I would be paralyzed.
I have been taking the MS protocol for 1.5 yrs now. (1000 mg/day x's 3 days) It has been slowly building up in my system.
I am getting bad side effects from it.
My heart problem has gotten worse (irregular heart beat) they had to up my med's for it. I have gained weight (lots of it) I have also put on allot of fluid. My Blood sugars are out of control opening me up for diabetic complications. After talking to my doc we have decided to not take the steroids unless my breathing is effected. So in a few months I will be paralyzed from the chest down once again.
I like the way I am now.
I also do not want to have to rely on the nurses like I use to.
I could not roll in bed on my own.
I also have bowel issues, can not go on my own.
bladder issues. Have a super-pubic catheter
Swallowing issues
--- I can not swallow solids without liquids. Around 20 times a day I swallow the liquid wrong.
I am down about this as well as angry.
My Hubby is upset it as well.
We do not know if it is going to once again effect my breathing.I am hoping the chemo I took will have shrunk the lesions enough that my breathing will not be effected.
Thanks for letting me vent
I will get through this
I take steroids to keep moving. Without them I would be paralyzed.
I have been taking the MS protocol for 1.5 yrs now. (1000 mg/day x's 3 days) It has been slowly building up in my system.
I am getting bad side effects from it.
My heart problem has gotten worse (irregular heart beat) they had to up my med's for it. I have gained weight (lots of it) I have also put on allot of fluid. My Blood sugars are out of control opening me up for diabetic complications. After talking to my doc we have decided to not take the steroids unless my breathing is effected. So in a few months I will be paralyzed from the chest down once again.
I like the way I am now.
I also do not want to have to rely on the nurses like I use to.
I could not roll in bed on my own.
I also have bowel issues, can not go on my own.
bladder issues. Have a super-pubic catheter
Swallowing issues
--- I can not swallow solids without liquids. Around 20 times a day I swallow the liquid wrong.
I am down about this as well as angry.
My Hubby is upset it as well.
We do not know if it is going to once again effect my breathing.I am hoping the chemo I took will have shrunk the lesions enough that my breathing will not be effected.
Thanks for letting me vent
I will get through this
thinking of you and sending you healing thoughts
PS: It's wonderful to hear that your hubby is so supportive!
many hugs, connie
I know what you are saying about putting on weight. It just starts that cycle of not feeling that you can get around, so you stay still and the meds put on more weight ect. ect.
I wish I knew what to tell you. I hope your doctor is keeping an eye on you, I mean really a caring eye and doing his best.
I am praying for you that your spirits will be able to stay up while they figure something out for you. If you like where you are health wise, then I hope that continues and that you will be ok off the Prednisone. Thinking of you, love carla
Hang in there mate!
In the US the MS society gives $500 a year for home health aide help. I know how limited nurses and aides are in the help they give in nursing homes. It can be very frustrating. I know people here who do hire people to help them occasionally in nursing homes. Its not much but would that be an option?
I'd be happy to give you what ideas I have, Wish I could do more.
In any event don't lose your incredible fighting spirit, My prayers are with you,
Melanie