I have been so busy working on the physical therapy aspect of my recovery that I forgot I have a chronic illness that I know almost nothing of, especially how it manifests itself after the initial symptoms abate.
So I am taking it to the Internet:
To others with Chronic Inflammatory Demyelinating Polyneuropathy that find this blog, please share (with me privately via my email or in the comments below) what your medicine regeme is. What do you take and how much? Any physical therapy? I take a mixture of immune suppressants, IVIg and Prednisone.
Have you had a relapse? How severe was it? How did you recover? Do you think there was a trigger for the relapse?
Who has made it back to work or school? Or India?
How much time do you spend each week organizing appointments, rides, insurance stuff? I feel like I spend hours a week, but it is probably less than that.
Please feel free to leave your comments below or email me.
Thank you.
First off IV immunoglobulin is not an immune suppressant, rather it helps clear the blood of T-cells that are damaging the mylan sheath of the nerve. Gurrently I am not using an immune suppressant. Just the IVIg 55 mg a day for 5 days, once every three months.
ReplyDeleteI am also taking Neurontin, for nerve pain and Primadone to control shaking. Among other medications for other ailments.
CIDP is one disease I will never recover from. In fact it will be the disease I die from, some where down the road. Hopefully a long road.
I have little surface sensation, and little control of my feet. Hence no driving.
I work for myself and do a lot of it out of my apartment.
Have been in and out of motorized wheelchairs twice in the last almost 15 years, and am about to be back in one shortly.
CIDP is a rare disease, in and of itself, but it is also the host for even rarer diseases. Because each individual is different, each individual can be in total remission or deteriorate rapidly.
There is no cure, no way, at this moment to stop the onslaught of this disease.
There is some work being done with stem cells, but it is still in the study stages. That one is a painful and very expensive course of treatment over a period of 18 months. The results, so far have been quite good, and in several cases returned the person to normal health.
If you have any other questions don't hesitate to write.
David McKibben
grdfa@yahoo.com
Oh, yes about falling. I fall physically probably only about 100 times a year. Most I catch myself before I hit the floor.
ReplyDeleteThanks for your response. It was very enlightening.
ReplyDeleteI take Cellcept for IS. Someone, I forget who, said that one of the positive effects of IVIg is it helps keep your system clean from infections, etc. I don't how much credence I would put to that notion just yet.
You also touched on something I realized I forgot to ask: the relationship between CIDP and other illnesses. Would you care to share which illnesses you are talking about?
Lastly, what kind of work do you do?
Thanks
M