Got Good News Today!
AnonymousFebruary 21, 2007 at 5:04 pm
Have to share this with my new family. Visited my neuro today and she is so pleased with my progress. We are experimenting with how long in between IVIG sessions and limit of sessions I can tolerate. I am hopeful that we can find a balance of IVIG sessions that are productive to my body AND my checkbook!!! Thanks to all of you for your encouragement and information. I relay some of this to my neuro and she is astounded with some of the info I have found on this site. Good luck and good health!!
AnonymousFebruary 21, 2007 at 9:44 pm
Some of us do go into a remission or end of progression. The way I knew that I no longer needed IVIG’s or treatments other then physical therapy, was that I lost my “what if” fear, what if I really need IVIG’s, what if that’s what kept me stable. What you are looking for is stability, do you feel the same all the time or do you still have good days/bad days.
I like the attitude your doctor has. I have read so many posts where the doctors were highly critical of advice from people on this forum.
AnonymousFebruary 22, 2007 at 12:07 pm
Nates neuro said something that totally took me by surprise when I told him I had gotten a lot of information from the internet.
He told me that was a very dangerous thing and that I should not rely on any info I got from there.
Wow. Both Nate and I looked at each other and rolled our eyes. LOL
Needless to say, I didn’t pay any attention to him and neither did Nate.
I’ve learned more here than any other place.
Any patient savvy enough to come here and post has also done a lot more research on the internet than the doctors have.
They go by what they learned in their training but that is limited unless they do their own research and lots of them don’t have much time for that now that they are in practice.
Having the internet and sites like this one are a great aid to us all and to have a doctor tell you that the info is “dangerous” is just plain ludicrous IMO.
We even have experts here like Doc David and that can’t possibly be dangerous.
Nate, diagnosed 1-6-06, home 9-30-06
AnonymousFebruary 22, 2007 at 3:03 pm
Thanks for the input and prayers! As far as the “what if” is concerned – I do this one day at a time. I have been fortunate in that I am VERY aware of early symptoms and contact my wonderful neuro immediately. She is right on top of my situation and doesn’t hesitate to order IVIG. I am optimistic, but also live in the real world and know this is a long term disease. But I have gotten so much encouragement from this forum, knowing I’m not alone, that my spirits soar everytime I visit here. As far as some doctors not keeping up with treatments, symptoms, etc., I agree that it is VITAL that you find a neuro that treats you as a partner, not a dollar sign! I saw one neuro who had only read about CIDP and hadn’t had a patient who suffered from it. I knew more than he did! We on this forum not only read the same material, but we live it. We know more what works and what doesn’t, which symptoms mean get help now and the residual effects of the meds. So, I thank God that I found this forum and only wish that someone finds a cure so we can just chat about fun things!!! Good luck and good health!
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