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.
Without steroids I am paralyzed from the chest down.
I get the steroids every 2-4 weeks.
I have been told they will stop working in the near future.
I am on chemo to hopefully shrink the lesions & therefore lessen the symptoms.
I got a three day treatment of high dose steroids then 2 weeks later got another three day treatment. I am moving better then I have in a yr. I know it will not last.
Last weekend I was at home & had to use the commode. I was able to partly stand to move on to it (we don't have a lift at home)
In physio we are going to start to do that movement. Take the legs off of my wheelchair & try to raise my butt off of the chair. But not to stand this way if my legs give out I will land on my chair.
OK that is the back ground here is my ??
I know from the past the steroids will start to ware off in a few weeks. It is only going to be a temp situation. Part of me wants to get my legs as strong as possible. Part of me is afraid that I will get sad when I lose that ability again.
I have not stood for one yr. & have come to accept the fact that I am in a chair.
What would you do? Would you try to stand if only for a few weeks??
Or don't try & try to avoid the heart ache
I get the steroids every 2-4 weeks.
I have been told they will stop working in the near future.
I am on chemo to hopefully shrink the lesions & therefore lessen the symptoms.
I got a three day treatment of high dose steroids then 2 weeks later got another three day treatment. I am moving better then I have in a yr. I know it will not last.
Last weekend I was at home & had to use the commode. I was able to partly stand to move on to it (we don't have a lift at home)
In physio we are going to start to do that movement. Take the legs off of my wheelchair & try to raise my butt off of the chair. But not to stand this way if my legs give out I will land on my chair.
OK that is the back ground here is my ??
I know from the past the steroids will start to ware off in a few weeks. It is only going to be a temp situation. Part of me wants to get my legs as strong as possible. Part of me is afraid that I will get sad when I lose that ability again.
I have not stood for one yr. & have come to accept the fact that I am in a chair.
What would you do? Would you try to stand if only for a few weeks??
Or don't try & try to avoid the heart ache
Nothing but sympathy here and i hope you make a choice that benefits you!
As for the steriods... Can they give you more regular infusions if they are working that well for you? I take a monthly infusion and it has done wonders for me. I take a lot of vitamin D and calcium to avoid damage to bones from regular use.
I did it once and it helped me...it was amazing. After the first dose I started feeling so much better.
This is the website to look at:
http://www.acthar.com/
Good luck, I hope you are able to try it.
Staying mobile is my best option. When I started walking again last August I could barely make it to the front gate. Every week I went a little further.Now I'm walking for half an hour each day
But since MS affects us all differently, I think that you have to do whatever you are able. If you have access to MJ, either legal or illegal it may be beneficial.
Jill
It is a corticosteroid much like what your body makes, and has significantly less side effects that solumedrol, and can be taken at home.
Like Punky1 said, it is expensive (very) but the chronic disease fund offers assistance. Not many people know this, but the company that makes ACTHAR funds the chronic disease fund monies that go to helping people obtain the ACTHAR, and it offers assistance to everyone, even with insurance.
I take 15 days at a time every so often, when i am not feeling best and it is really a great medicine.
My point is this - you just can't predict this disease! I would not decline a therapy that is working even for the short term just because it may not work for the long term. If you are okay with the risks of the therapy and it works to improve your quality of life even for a little while then go for it!