Reply To: New to this…
Sorry to hear of your recent diagnosis. It is too bad you didn’t get much help from early Dr. visits. Many doctors just don’t realize how hard it is for some to actually make a visit, and when they do they are not messing around with the sniffles.
I waited 3 months after first symptoms before I went to Dr. and I could barely walk at that point. Luckily he went thru the entire process and involved a Neuro, before settling on GBS….which in turn became CIDP.
There is some research on CIDP, but it isn’t a high profile disease, and doesn’t impact the number of people that Cancer, Alzheimer, etc suffer.
If you want some interesting thoughts check out Dr. Burt at Northwestern University Hospital in Chicago area. He uses your Stem Cells to rebuild your immune system after wiping it out with Chemo. Not something I’m ready to jump into, but I keep tabs of its progress.
Your journey will be quite a challenge if its anything like mine, that is for sure. Everyone is so different its impossible to say what to “expect”, other than a lot of challenges. Staying active while working full time and then fighting off fatigue is my recent challenge after 7.5 years of CIDP.
IVIg is a life saver for me. Without it I would be gone by now. I receive monthly treatments that my Neuro and I make adjustments to in order to keep me on a fairly even keel. I take minimal drugs (other than IVIg) so that I can continue to work at an office job. Too many mixtures of medications plays heck with my memory and concentration, which in turn weights heavy on self confidence.
This board will help you some, but it isn’t nearly as active as it was many years ago, probably due to increased social media sites like FBook, Twitter, Pinterest, etc…
You will certainly have to be your own patient advocate as so much of what you experience has to be relayed verbally to doctors. They can’t take any scientific readings and give you the right treatment regime.
One thing I have done since day 1 is keep a journal of medication changes with dates and amounts. I also include treatments and how I feel going in and coming out. Nothing elaborate, not even full sentences at times, just something to date stamp and journal my trip. It has been invaluable when I see a different specialist, or we are looking to “try” something different. Also, if you end up getting into a trial you will probably have to fail all the other prescribed drugs and regimes.
Good luck and God bless.