Inquiry

Hey I’ve been trying to find another young athlete who is going through this. I have CIDP and have lost 20 pounds due to atrophy so I’m very weak and have some tingling sensations. I hope to be back to normal running and around 50 miles a week and lifting two or three times a week in about a year, and from the sounds of it hopefully it won’t take much more than a year for you, and possibly even less. You might like this video since it’s about a soccer player.

I’m 20 as well (I read some of your other posts on a different thread) and when I get better I intend to be on my college track and cross country teams and be competing at a high level. I WILL do this and no demyelinating nerves will stop me.
Also here are some good pump up songs/comeback songs I like to listen to either doing rehab or just whenever I feel like it.
http://www.youtube.com/watch?v=LGmOz2MQPh4

http://www.youtube.com/watch?v=TxAGGyrvJ9c

Stay positive because there are are studies that show that if you stay positive and visualize daily you playing soccer for example, you should have a better prognosis. Let me know if you have any more questions or just want to talk to someone who wants to not only be able to walk normally again but compete athletically at a high level again. I hope this helped.

Dear Candr,
My son was 9 when he got CIDP he is 15 now. How long have you had cidp? How often are your treatments? Do you get them in your dorm room? From the begining we have tried to instill a positive attitude in my son. 98% of the time he is positive, the other two percent is attributed to reactions after treatment. If your doc gets you on the proper treatment plan and you stabilize, you should be able to start working out again. We have the relapsing remitting type so our response to ivig was great. Honestly though, 50 miles a week might be tough within the first couple of years. My son has regained all of his stregnth and then some. He works out every day with weights, runs 5k and swims. He wants to be an Army Ranger and is trying to ready himself. We know he will have to be in remission to qualify, but he is hopeful and I am praying (for remission, not necessarily his career choice, but I will support him) Anyway, you get the picture, your goals are attainable through hard work and patience. It takes time to heal but it is possible. We were paralyzed and now he is stronger than the average kid!! Good luck and keep up the good attitude. Keep us posted!
Dawn Kevies mom

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!

Hi Candr,
We do try to keep as close to possible to that diet. I mostly cook from scratch and we try, operative word, try to avoid sugars as much as possible. We also did alot of allergy testing with a blood test called ELIZA and we have removed foods that he has sensitivities to. Honestly he is much better since we removed those foods. How often will you be getting treatments? Is it 120 grams or micrograms? What college do you go to? You may already know this but just in case, if you are due to take any immunizations, you no longer can. It would be ineffective with the ivig and somewhat questionable for people with autoimmunes. One day I am going to set my mind to it and research if people getting ivig actually get the immunities of immunizations from the donors?

About your gait improvement. It took only three days to go from not being able to walk, to running down the hall. But it did take a few months before he was able to balance on the trampoline and play basketballl. I would say at the end of the first year things were pretty back to normal. I can confidently say that although this disease made him suffer and weaker initially, it has made him stronger beyond belief in regards to courage, determination and without a doubt in the compassion department. It was nice chatting with you, I can tell you are a strong determined individual!!

Hey Dawn Kevie’s Mom, I actually just started the anti-inflammatory diet so if you have any tips I would love to hear them! I still have to have an appointment with my neurologist for him to decide how often I am to get treatment, I’m assuming somewhere around once a week to once every two weeks for a little while until hopefully I can wean off of treatment altogether. I received 120 milligrams; 50mg. the first day and 40mg. the second and third days. I go to a decent sized division III state school just outside of Rochester NY. And thanks for that heads up about the immunizations, and if you want I could ask the nurses at the infusion clinic if they know if people who get IVIG receive the immunity to diseases that the donors have from prior immunizations.
I was actually lucky enough to be able to walk the whole time while I had CIDP, but the last 6 weeks or so I needed a cane (I still do for now) and more often than not a friends should to hold onto while we walked somewhere. My parents actually work at home and I have some really understanding friends so they have all helped me walk and what not these past few weeks when I was at my weakest. But within 5 days of treatment I was “caning” around faster than before, but outside of my house I still prefer to hold onto someone’s shoulder as well as using a cane.