Young mom with CIDP

April 2, 2011 at 6:46 pm

Hi Chirpy,
I feel your pain as a young mom, I’m 35, with 2 young girls, 5 and 3. It has been a tough road for me because of the lack of treatment due to being misdiagnosed. I am so happy that you were diagnosed at an early stage. This greatly increases your chances of living a normal life. Yes, it is a very scary thing to hear. Especially when there is so little information on it and so few doctors who specialize it. You will find that one of your greatest resources will be this forum. In here, you will find new treatments that you can bring up to your doctors, you will also find alternative treatments that have worked for others so that you can decide what you are comfortable with and bring things to your doctor that he/she may not be current on.
I agree with your decision on opting out of the sural nerve biopsy. I had it, it was inconclusive and am now living with permanent foot pain and an uncomfortable feeling that can’t be described. I walked around with this disease for over 8 years before it was diagnosed. The pain, tingling, and numbness kept getting worse so a neurologist went ahead with a NCV and EMG and noticed the severe lack of conductivity between the nerves. I followed up with more NCV’s and EMG’s for the next few years and the demylination was clear as day! I have been receiving IVIG treatments for almost a year and a half and can say that the IVIG has been a Godsend! I didn’t react well to the prednisone at all! I became so mean and moody! And this was before I had kids! I don’t know how my husband stayed married to me! I was just awful, and that was on just 10 mg of prednisone. They wanted me on 100 mg! I said “no way”!
Although IVIG sounds scary, it really is the only thing that has curved the demylination of the nerves. Since there is still no cure for this disease, the trick is to stay ahead of the demylination. The side effects of the IVIG can be painful, but the loading dose is done in the hospital so that you are monitored around the clock. You can expect to get migraines, back pain, nausea and then some. Planning ahead is key! Ask your doctor to have the orders ready for pain medication (tylenol is a joke for this), you will need something strong, Imitrex for migraines, and something for the nausea. Also, prevention is the best medicine so insist on getting at least 1 full liter of IV Saline and stay fully hydrated. Hydration will lesson the side effects of the IVIG.
It is tough explaining this to your kids. I had a very hard time. How much information is too much information??? I just realized that the sicker I got, the more honest I had to be, no matter how young they were and are. They saw a mom that went from working full time, studying part time and still being extremely involved in their lives go to a mom that was spending 3 days at a time in bed and when I was awake, I was exhausted, in pain, walking with a cane and in and out of the hospital. It scared them. I didn’t realize how terrified they were every time I would go to the hospital because I would leave for 5 days, come back with bruises from collapsed veins and spend another 2 weeks in bed vomiting and suffering from severe pain and migraines. Just last week I went to the hospital and I took my video camera with me. I filmed part of my stay and treatment and explained it. I just showed it to my 5 year old today and she told me that she is no longer as scared as she was before about the hospital. She was able to see that it was a normal building where mommy is taken care of 24/7. This really put her at ease, which puts me at ease.
This disease is a such a sneaky little bastard!!! It affects everyone in a different way. Take from this forum what works for you. And when you feel like crying, cry with us. That is what we are here for. I remember when I was first diagnosed, I would post my feelings here and it was brought to my attention, thanks to this forum, that I was going through the classic symptoms of denial. I also mourned myself here. I learned how to say goodbye to the person I was pre illness and accept that this disease is bigger than me, so I stopped fighting my new limitations. There are new limitations that we have all had to get accustomed to. That is one of the most hardest things to do. But this is a great support group. Don’t ever feel like you are whining, feeling sorry for yourself (because you will, and who wouldn’t). None of the emotions that you are going to experience are emotions that we haven’t all gone through. We are here for you. Welcome to the forum family. I wish it was under happier conditions, but it is a good thing to know that there are people just like you, out there, sharing your world and experiences.
Be well.