Part 4

espersen4
Member
Registered: Jun 2005
Location: Salt Lake City, UT
Posts: 41
Nrain,

I am also in my twenties. I was actually 19 when I first experienced symptoms and had a quick diagnosis as well. I started to feel weak in my hands and also thought it might be carpal tunnel. I went to the doctor and he ruled that out. He referred me to a neurologist and my appointment was scheduled for 2 months later. Over the weekend after seeing the doc, I got really bad really fast. By monday, I could hardly walk. My little sister was seeing our pediatrician that say so I went with her. He took one look at me and knew that something was wrong. I was not having trouble breathing so he felt I was ok to go home with my parents. The next day, I had an appoinment with the neur. I spent all day in her office having a spinal tap and other kinds of tests. She diagnosed GBS on wednesday. I started IVIG and returned to almost full strength by the following wednesday. I had lost strength so fast that she would have hospitalized me had I not still lived at home where someone could be with me 24/7. That was in January. I kept all of my strength until March when I experienced the same symptoms again. Because I had responded so well to the IV before, she treated me again. Then every four weeks, I would relapse and need another round of IVIG (only 2 treatments instead of 5). She diagnosed CIDP in April. I continued IVIG every four weeks until my wedding in August then we decided to try something more long term. I went on Imuran but still had to receive the IV until december when we switched to Prednisone. After I gained 50 pounds in 2 months and started to have heart problems, high blood pressure and signs of bone loss; the decision was made to change medications again. I started taking Cellcept in June. For almost a year I remained on Cellcept. No side effects and no relapses! So in March, my husband and I decided we wanted to have children. I went off the cellcept and have experienced no symptoms up till now. We are very hopefull that I have gone through my ordeal and will be able to have children without anymore relapses. I feel very lucky to be doing so well. I am very sad for the people in these posts that are still suffering. Good luck to all of you and I will continue to read others stories. Hopefully, I won’t have anymore of my own experiences to share!

nrain98
Junior Member
Registered: Jun 2005
Location: Southern California
Posts: 8
Thanks for the information
I wanted to take a moment and thank all of you who respond to my thread. I started the IVIG last Monday for 5 days. It was boring but I didn’t have really any side effects. By Saturday I was walking around like a normal person and had minimal numbness in my hands and feet. I actually woke up after walking a lot the day before and didn’t feel like had a charley horse or my legs were on fire. Today, I feel like I did 6 months ago, great. I don’t know if some of it in mental or the IVIG did all the work but I am thankful I am now able to stand on my tippy toes and I worked out today for the first time in over a month. I know compared to others that my symptoms while got worse very quickly weren’t as bad as other people’s so that is why I am thinking I will beat this.

I am now worried about a possible relapse. I am in the process of being approved for another IVIG probably in August. I don’t want my improvements to regress. Is there any way I can decrease the likelihood of a relapse or is it just random??? I am almost done with my prednisone and I am taking about 900mg’s of Neurontin, which I will be on for awhile. I just am not sure where I go or what I do from here.

Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481
nrain,

Take the time to write down your activities, and how you feel. If you can walk around the block and not feel tired, or whatever. Keeping these notes will help you for a reference when you have your next round of IVIG in August.

If you do have another relapse (I hope you do not) you will have some notes to compare, “Within a week I was doing this”, or “I got tired doing that” “Today I walked up three flights of stairs at work”, whatever you did, or could not do. ” After walking the steps I was wore out for two days.” That information will be quite invaluable later on.

It’s easy for me to say that now.

Dick S
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If it is to be, it is up to me.
CathyB
Member
Registered: Jun 2003
Location: Alexandria, VA
Posts: 80

Welcome to our group! Sorry to hear you have CIDP but this is a great support group for all of us.

I was 8-10 months from first symptoms to diagnosis 5 years ago this month.. I’m lucky because I was diagnosed within 5 minutes of seeing a neuro and because I respond well to IVIG’s and prednisone (5 mg every other day).

I’m on IVIG’s every 3-4-5 months — depending on my symptoms between treatments.

Had a hard time at first working and having a life, but am in a good place now.

This is definitely a long term commitment that none of us want to have but this group is so supportive — we’ve all been through it.

Log on anytime.

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CathyB

kwackenhut
Senior Member
Registered: Apr 2005
Location: Western North Carolina
Posts: 125
My son was also diagnosed quickly.

He developed symptoms in the middle of April, and after extensive test (Xrays, MRIs, etc.) his pediatrition got him an appointment with a neurologist the very next day. His neurologist immediately suspected GBS and after a spinal tap he received his first IVIG treatments. He responded well at first–when he went back for his 2 week check he was at least 80% improved. They scheduled him for a final recheck one month later–but during the week before this appointment he began to have symptoms again.

When we were seen by the neurlogist this time he thought Adam had been over-doing it and recommended that he “take it easy” and scheduled a follow up in a month. That was on June 13.

Adam quickly declined and I called and got them to see him on June 29. At this time he was immediately addmitted to the hospital and after another spinal tap & nerve conduction tests his Dr determined that he has CIDP and he had another round of IVIG. He has an appointment on July 13, to check his progress & schedule more IVIG treatments. Unfortunately, there has not been much improvement–but I am hopeful that since we caught it early he will be able to return to school on his own two feet in the fall.
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Kim
Fred Martin
Member
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
Kim,

Has your son’s doctor discussed other treatment options if the IVIG isn’t helping him? IVIG did not work for me, however when I was switched to plasma pharesis and prednisone, I got my strenght back with in a few weeks. Immune suppressants, certain types of chemo (cytoxin is one) and IV solumedrol have also been helpful to many with CIDP.

Get feedback from those of us who live with the disease, as we all share similar experiences and have collectively tried many, many treatment combinations until each of us hit on the one that worked best for our situation.

Best to your family and to your son. Stay positive
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fredaci
kwackenhut
Senior Member
Registered: Apr 2005
Location: Western North Carolina
Posts: 125
My son has only received two rounds of IVIG–this last one compressed into two treatments instead of 5. He has an appointment this Wednesday when we will discuss future options. Our doc is actually consulting with a neurologist in Atlanta who is supposed to be an expert. As we are less than 2 hours from Atlanta (the same as from Chattanooga, where our current Neurologist is located) we may end up going there.

Thanks for your support,
Kim
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Kim