New to this…
March 20, 2015 at 8:50 am
Hello. I am new to this forum after a recent diagnosis of CIDP. From what I understand Mono was the culprit. Who would’ve thought something so many people get and recover from so easily could cause this much damage? I sure didn’t. I have been reading this site and watching the videos and trying to figure out what the future might have in store for me. My journey to this point has been a long and frustrating one after being diagnosed with Fibromyalgia and told to, “accept it” and “take aromatherapy baths and a walk around the block.” I’m glad I didn’t just accept it. One specific doctor questioned me about my boyfriends treatment of me. I fought hard for the referral that lead me to the Neurologist I have and who diagnosed me. I fought because something inside me said, “this isn’t Fibromyalgia” and I was starting to get very scared as my condition got worse and worse. It was a stunner for both of us. My Neurologist had never diagnosed anyone with this condition – and I had never heard of it. But, it was clear I didn’t have Fibromyalgia and all the aromatherapy baths and walks around the block wouldn’t help me.
So now I go from a very active lifestyle that used to take me on extended camping trips, hiking and just enjoying nature – to I have no idea. I completed my first round of IVIG which lasted for 5 days – with pain improvement after the first treatment. But slowly the pains are coming back. Not sure what to make of this. But I remain cautiously optimistic. This pain relief was a surprise because I was told not to expect any improvement for about 3 weeks. So, bonus I guess or maybe the power of positive thinking? I needed relief from at least some of the pain desperately.
I sure would love to hear from others with CIDP. I have lots of questions. I don’t think I’m scared, maybe a little nervous about what the future may hold but I am confident in my doctor and I have the love and support of a great husband (we were recently married).
One question I do have – if anyone can answer it – does anyone know how much research is being done into this disease?
March 24, 2015 at 8:13 am
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.
March 24, 2015 at 10:44 am
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.
March 24, 2015 at 3:50 pm
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.”
March 30, 2015 at 7:26 pm
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.
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