Grateful
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September 16, 2009 at 9:29 am
Hello,
I am so grateful for this forum, nobody I know had ever even heard of GBS or CIDP before I got it and it is comforting to know there are people out there I can relate to. Here is my story.I was diagnosed with GBS in Feb ’08. Numb legs and arms, weak legs and arms, and pain (like you slammed your funny bone on both arms and legs at the same time). I was lucky. I was always able to walk but it wasn’t pretty. I had 10 days of IVIG and then 3 more a month later. After months of PT, I was OK except for residual numbness in my feet and occasional funny bone pain.
Two weeks ago I was hit again. This time I was stricken harder than the first. The neurologist said that I have CIDP. I spent a little over a week in the hospital and had 7 days of IVIG. I could barely move in bed and was close to being on a vent but it turned around and I began to recover quickly. Now I am using a walker to get around and recovery has slowed to a crawl. Still weak and numb but this time not much pain. Not sure when or even if I can go back to work. I am a Park Ranger.
Oddly enough, I was the caregiver not the patient! Thirteen years ago my girlfriend contracted bacterial meningitis and lost her fingers, toes, and heels. She spent 165 days in hospitals over a two year period and had many surgeries and lots of rehab. Four years later when she was well enough we were married. I installed lots of mobility aids in our home and never dreamed that I would be the one using them. Now we both know what the other went through but even at my worst with this, I still look at myself as the caregiver.
The doctors here don’t know much about GBS. I don’t seem to fit the norm for what they expected. I have a few questions if anyone out there can offer any insight.
– Can you repeatedly get GBS? Or if you get stricken more than once is it CIDP?
– Can anyone recommend a knowledgeable doctor in the Boston area?Thank you so much for letting me tell my story. It helps to know there are people out there who know what I am going through.
Jon in CT
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September 16, 2009 at 1:01 pm
Jon,
So sorry you are going through this. My 12 y/o was stricken at 10 years. Typically a GBS dx is given first, then if reoccurrence happens CIDP is the new dx. That is what happened with us. Since the second set of ivig treatment, have you been on a regular schedule of ivig? Also, some people have a real “stubbrn” case for lack of a better word. A few on the site have done plasma pheresis followed by ivig, or some do steroids in conjunction with ivig prednisone or sometimes iv solumedrol. Finding a schedule that works for your needs is tricky. Some get treatment monthly, bi-weekly, or even weekly. Write back or pm if you have any specific questions. Prayers sent your way. -
September 16, 2009 at 3:21 pm
Jon.
I have you in my prayers. Dawn knows more than most doctors. She is a very good source to answer your questions I welcome you here and you will meet some wonderful people
Your friend (Lakoda):) -
September 17, 2009 at 9:45 am
Your words are kind Steve!
DAwn Kevies mom -
September 17, 2009 at 11:47 am
Thank you for your replies. It means alot to me. You are in my prayers too.
Jon in CT -
September 17, 2009 at 12:27 pm
Jon,
Welcome!
Sorry you are going through this.
I hope your recovery continues, mabe you can return to work in the future.I will pray for you
Shirley
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