[QUOTE=Bill]Hard to say cause for 4-5 years I was told carpal tunnel then when I finally got a dr. to look at my getting weaker it was about 10 months before we started treatment. The initial “look” said CIDP but it took months to rule out all the other possibilities.[/QUOTE]
My husband had an almost identical path as yours Bill. Carpal tunnel diagnosis for 4 or 5 years, carpal tunnel surgery with no effect, then profound atrophy of the right hand and forearm, then footdrop, and then diagnosis. It took a specialist at a neuromuscular disorder clinic to get to the bottom of things and she did this very quickly. First neurologist was not so good and husband wound up with lots of permanent damage due to his incompetence. Moral of the story is it important to always get a second opinion. We didn’t do this in the beginning.
I keep looking at this thread to learn from you all. Especially interesting is Norb’s chart. I should know but how long ago is it since your problem started Norb?
Similarly with all of you – Allaug, Andrew etecetera.
I ask because I have just completed the update form for the CIDP Network here in the UK. At least 2 others are PDNers rather than ‘pure’ CIDP.
I wrote that when I was eventually diagnosed I was told that it was believed that it ‘is slowly progressive and mainly sensory’. True enough but after 14+ years the progression is very definitely in pain and not particularly neuropathic pain. Chaotic disorder in the behaviour of the motor nerves leading to the muscles in my feet is causing very painful cramping of the tendons. Does that ring any bells with you anti-MAG folk?:(
I have CIDP and I don’t know if it’s the same for other’s, but as far as CIDP is concerned, don’t look for improvements and strength in weeks, we heal slow, so months and years are more realistic. I was one of the ones who reacted well to IVIG’s and never got sick. If Joe just cannot tolerate the side effects of IVIG, PP or plasmaphersis can be tried. It works the same, it’s just an alternative for IVIG, but Joe might not feel so sick with that.
One thing you should know, if you don’t feel stronger or improvements are so small you don’t even look at them, that does not mean IVIG’s are not working, ANOTHER VERY IMPORTANT PURPOSE IS TO “CONTROL” (not cure us) PROGRESSION AND FURTHER DAMAGE. When progression is controlled, WE CAN HEAL! But, to control progression many of us have to be on maintenance infusions, usually every other week to a month apart, for years.
Hi and welcome….
It takes what it takes and each case is different from the next. We are given each day and we have to make the best of it that we can. Today, I was able to get some chores done and plant a couple of things in garden. Two days ago, I could barely move from fatigue and pain. There isn’t any logic or reason, but I do find that my emotions can cause a flare-up to happen. Relax and take care of yourself the best that you can. We never really know how we are going to feel. Some people do have a fantastic recovery and can carry on with their lives. They probably do not visit the forum often because they try to leave their disease behind. A lot of the people here need constant support to be able to enjoy their lives daily.