Hi
Thanks for all the emails
I’m getting ready for my first infusion !
I’m 61 in good health except for cidp!
It started about 5 years ago , when I noticed I had a problem tripping
Cause of toe on my left foot catching.
I have had many problems with my back, over the years and have gotten 9 shots
So the doctors all thought it a
Was my spine pinching the nerves. 4 mri’s many X-rays later.
Finally a surgeon sent me to a neurologist
6 months ago my right foot started the same thing. If I am standing I can not go back on my heals, no strength on lifting up on my feet. Also I can only walk a short distance my legs feel like a walked a mile. I can live with the pain in my back but this is driving me crazy. I can’t even shift a motorcycle on run or jog one step!
What can I expect from these treatments?
Thanks
Paul
You can expect to feel a little weak and sick at first, but then followed by a return of much strength and stability. But it will depend on you, as each person is unique. It will likely be cyclical, with a period of feeling good, followed by a gradual weakening until the next treatment.
Hi Paul,
I live in Vegas if you need someone local to ntalk to.
Let me know.
T
Hi Paul,
What will your infusion be?
Over here in Israel, for CIDP I get Solumedrol.
I did have IVIg infusions for Gillian Barre ( 5 bottles/day x 3 days) and that seemed to sort me out, so after 10 days in hospital I went to a rehab hospital for a few weeks, but this was all about 6 years ago.
As I was getting better from GB I started having some symptoms again and this time it turned out to be CIDP.
At least having GB first, put them straight onto the probability of CIDP, so I didn't have months of wondering what it was.
For CIDP I got Solumedrol 1,000mg/week, then every two weeks, then every month, etc so that now I get 400 mg/month.
My only side effects are slight insomnia the first night, but then no problems. Although I did get Glaucoma and have lost some sight in both eyes in the lower inner quadrants, so it’s a good idea to have eye tests.
Hope this helps,
Bob Knight
Hi I had similar problems with my feet but after a year of ivig privigen they have inproved a lot .Good luck and stay strong