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.

CIDPWhat,

I was diagnosed back in August 2014 with CIDP. In September, I had my first round of IVIG for 5 days, followed by 3 or 4 days in October and November. My neurologist told me that I would receive treatments for 3 months and then take a break to see how things went. I felt a little better after the last treatment, but right around the holidays I felt horrible and I was starting to get pains in my feet that hurt terribly. I called the neurologist and he put me on 300mg of Neurontin to be taken at night and increasing my dosage every week until I reached 900mg. I went to see him after the first of the year and we started my treatments again in January and I just finished up a few weeks ago. I feel a lot better! And, I’m hoping and praying it stays this way. The neurologist told me he expected me to feel better after the second round of IVIG and that it takes time. I felt the same way as you…what does this mean for my future? I remember asking him when I was first diagnosed, “will I end up in a wheelchair or walking with a cane or something…I’m only 32.” He told me that he didn’t have a crystal ball and he wasn’t sure what would happen but he was optimistic that I would feel better. I respected his honesty and I knew deep down that he couldn’t tell me for sure how this would all paly out. Sometimes I get down when I think about the possibilities of what may occur and then I try to remember that at least I’m still mobile and things could be worse. So, I’m wishing you the very best as well as all others that are suffering from this. God Bless.

It is surprising that a neurologist wouldn’t have heard of it, although many might have no experience with it. It not a common disease.

A nonspecialist probably wouldn’t have heard of it, but any physician should do knee reflex tests and recognize that some kind of neuropathy may be present.

There is research being done all the time on this disorder as for most, but neuropathies are difficult and not understood in detail.

As for the cause, it is generally not possible to say precisely what triggers CIDP, although it is generally thought to be an infection. There may be many different infections which could cause it, so it is not too surprising that it might be associated with a case of mononucleosis. Sometimes the infection is not apparent, as it need not have clinical symptoms to trigger CIDP or GBS.

Your own biochemistry is part of the equation also, because an infection which causes CIDP in some people will not do so in most.

Good luck with your treatment. I am glad you got a good diagnosis. “Fibromyalgia” is just a catchall term meaning “we don’t know what’s wrong with you.”

First! Let me pass the baton of Knowledge to you (and everyone else who reads this forum). The best advice I can give and learned is when faced with a Medical dilemma, go to a large city’s University based Medical Center, it will sace you so much running around with the clueless. You can also get remote 2nd opinions from John Hopkins and possibly Mayo.

With that said, there is a lot of study and research of CIDP. If you search for Medical Clinical Study’s there are quite a few Clinicals, but virtually no real answers. I am familar with Columbia Medical Universtiy in New York City, there is an IVIG and a drug study I am considering. Just don’t give up, and rely more on yourself then the Doctors. Go with your gut for the most part, then hold your breath and go with the best rescommendation multiple doctors come up with.

Good Luck!