Hi everyone I am so frustrated and in so much pain and weakness I don’t know what to do. I had the full course of gbs in 2000. I was diagnosed with Cidp about 2 years ago. I am continually getting worse. My husband was diagnosed with colon cancer in 2007 and ended up almost losing his leg due to over treatment of chemo and radiation and lack of proper care by doctors. He also ended up with a colostomy bag. It changed our lives forever. He was cancer free for almost 3 yrs then in jan 2010 his cancer came back and had metastasied to his brain and lungs. Needless to say that threw us both for a loop. My husband who was really the only one who ever understood the fatigue and pain I suffered for the last ten years. He was also my helper and shopper, best friend and shoulder to lean on until he was diagnosed with the above. I became the major caregiver and everything for him even in my state of health and am still the most tremendous stress I have ever experienced. He passed away on June 18th 2010 at home after being here in hospice care for 6 months. It has been a very long road and very much stress on me both physically and emotionally. I have had extreme pain in my head, neck and shoulders since January. Every time I looked at my husband, my head felt like it was going to explode with pain. I have been living off of Darvacet and valium. The last few weeks the pain has subsided in my head and shoulders and neck, but now I am having severe muscle spasms and cramps in legs and feet and as usual I don’t sleep. I cat nap all night because the cramps wake me up and my legs and feet are numb, tingly and feeling like they did when I first became paralyzed. Life does not slow down and I don’t have that much help from my family, they think I can get my head into a better place psychologically and get thru this. RIGHT! They have no idea what this ordeal and the loss of my husband has done to me and the assault on my already assaulted body. My doctor wants me to go on lots of heavy meds that have very serious effects, I only want to be out of pain and hopefully in remission for a few months. Rest is hard and stress is great trying to sell my husband’s business and take care of what the world requires. Cannibus seems to help as long as I can rest at the same time. They weren’t kidding about CIDP becoming more chronic as you get older and increased morbidity occuring along with a decreased life style. Not to mention bladder issues, wondering if any of you women experience this, they say it is part of the CIDP If you believe in prayer, please send some up for me. I am devastated. Thanks, Bunnyrarebit – p.s. my sons think I should take a vacation – i can hardly get out of the driveway and to the store much less travel especiall on a plane with my leg cramps.
Hi, all! Today I called the general neuro to decline the mri’s and was met with a resistant attitude. My point being I don’t fit trans. myelitis signs and symptoms, he wouldn’t treat me even if it was and it would cost my ins. deductible (about $1200) just to rule this dx out….when he said himself he really thinks I have atypical gbs. SO, I called the neuromuscular md that the orig. neuro recommended to me, confirmed that he takes my insurance and his ofc. faxed me a patient questionnaire (to see if it’s in our mutual benefit to be seen by him). I called the general neuro back to have my emg / ncv results sent to the neuromuscular doc (THAT was pleasant…not!). The neuromuscular md ofc. will call me Wed. to tell me if I need that type of doc or stay with gen. neurologist.
The nurse at the gen. neuro is a lovely lady, post gbs herself, so I assumed (yeah, I know…never assume) she more than anyone would understand my point of view about ongoing diag. testing as well as seeking appropriate teatment. Not so. This is all so frustrating and taxing….I seem to spend all my energy on making sure I’m getting the right help.
Dawn, you’re so helpful with the PT info. I am stronger than I was one week ago…in spurts. Gait is still off, sort of a waddle / shuffle. So, I’m guessing I’m entering the recovery phase. We’ll see what the next doc says! :rolleyes:
God Bless you and Kevin’s treatment!
I am new to this type of forum. It was a year ago in April I was diagnosed with GBS. I was in the hospital for 3 months. I came home in a wheel chair but since then I am now able to walk. I have gone back to work.
I find that I am not the same person I was a year ago. I am easily irritated.I was a mild mannered person lyet I now do not have patience for much.I forget things all the time, which is very frustrating. I feel very tired so often.My feet still hurt a lot.
Is my forgetfulness, fatigue,irritability part of all this? Do we change so much from this experience that we no longer are the person we use to be?
I am so frustrated.
I’m another one who can understand the frustration and stress you feel. I too live with my mother, so you’re not alone. I have a wonderful understanding mother though who feels great compassion for me, but she is in declining health and I’ve become a caregiver to her, as well as trying to care for myself. I have CIDP. Frustration is frustration whether you have a mom like yours or like mine. I live in my mother’s home, I’d love to have my own again.
Maybe Jerimy will be able to help you so that you can find a better life.
As Ali said, if you would tell us where you live, we’ll try to find a forum member who will help you. DO NOT BE AFRAID TO FIND ANOTHER DOCTOR, try to convince your husband to do so, tell him his new family said to do so. I have CIDP, neurologist #6, was the one who understood, the other’s before him, told me nothing could be done. I AM RECOVERING NOW, very slowly improving and gaining strength and I believe it is because I was on IVIG’s for three years. The IVIG’s, when they work, can control CIDP from progressing and when CIDP is controlled, we can heal and from there get better. Many of us do need to be on a maintenence of IVIG’s, it could be for a few years, and maybe for some a lifetime (this I don’t know), SO IF YOUR HUSBAND DID BETTER WHEN HE HAD THE IVIG’S, HE NEEDS THEM.
NEVER NEVER NEVER NEVER
WE DO HAVE HOPE.