Reply To: Inquiry

July 10, 2012 at 12:48 am

I got CIDP 11/1/11, the reason I know the exact date is because I keep a running log. I won’t bore you with the details because it’s a kind of long story but basically I got a very slow onset of CIDP that was very difficult to diagnose. First I was just tired when I would go to practice, but would feel fine during the day, then I started to get progressively weaker and less flexible, then the numb/tingly sensation set in and from there all of my symptoms slowly amplified. It took 9 tests until I finally came up positive for guillain-barre syndrome in a spinal tap. My neurologist told me that I should be getting better soon and that I had a mild case so the costly treatment would be unnecessary. I thought I was getting better; it was a mixture of wishful thinking and making excuses like oh well it’s hot today or oh I did too much yesterday. Eventually though it was apparent that I wasn’t improving so I did my own research online and found CIDP and it sounded like what I had so I E-mailed my neuorologist on 6/11/12. I had an appointment with him and he confirmed that I did in fact have CIDP. So now you know my condensed story.
I actually received my first treatment on 7/2/12 and 2 more later that week on 7/3/12 and 7/5/12. I had 120 mg. in total over the course of those three days. I have already noticed a difference in my gait, it’s not a huge difference, but noticeable to me at least. I go to an infusion clinic 15-20 minutes from my house, when school starts up though I can go to the hospital near me if need be. I was lucky in that I had no negative side effects from IVIG.
I know 50 miles a week may be a bit ambitious for the first year, but I have to try, and 50 miles a week is actually considered rather low at the college level. It’s great to hear that your son is doing so well! Also if he is having problems staying in remission, you may want to look into an anti-inflammatory diet. It’s worth a shot, and even if it doesn’t work it won’t really be detrimental to his health. Most of the things you cut out with a diet like that anyway it saturated fat, sugar and processed meat and other processed goods like crackers and white bread. In most cases it takes up to 4 weeks for the new diet to manifest results. This is a very simplified version of it, and I’m sure you can Google it in order to find out more, I’m still learning about it so I am no expert as of yet. Well that was sort of a long answer haha, anyway if you have any more questions or comments just let me know because I actually enjoy talking about it since I can’t with most people because it’s such a rare disease. And thanks for the well wishes!