I had back surgery 9/9/10 and got the pneumonia vaccine the following day….I got GBS 4-5 days later…hmmmmm, I think they could be related.I wonder why the nuerogurgeon, who knew about my idiopathic poly neuropathy, recommended the vaccine? Was he wrong? two months later, I am finally able to limp around without a cane but still have tons of pain in weird places. I am glad to find this site…I also belong to the Natl Neuropathy Site too. allen
I was just wondering if your neurologist has started IVIG infusions or Plasma Exchange? These are the most common treatments for CIDP and are almost always done. Though these can make you feel stronger and better, they are also used to CONTROL (not cure) the progression of CIDP and when the progression is controlled we can go into a remission. When we are in a remission we have a chance to start to heal.
I think it’s important that you talk to your doctor about starting IVIG or Plasma Exchange and finding a maintenance schedule that works for you.
SINCE YOU MENTIONED GOING TO U OF CHICAGO, YOU SHOULD COME TO OUR SYMPOSIUM FROM NOVEMBER 7TH TO 9TH, BEING HELD AT INDIAN LAKES RESORT IN SUBURBS. IT’S A GREAT WAY TO LEARN AND MEET US IN PERSON. GO TO MAIN PAGE FOR FOUNDATION AT [url]www.gbs-cidp.org[/url] FOR INFORMATION.
I was diagnosed with CIDP in 1998, a positive diagnosis, no question about what it was. Then about three/four years ago, a new neurologist told me I have CMT and CIDP and when the test results came back negative, he told me that some forms of CMT cannot be diagnosed. If your doctor is familiar with your family history and with CMT, ask him if some forms cannot be diagnosed.
Don’t be afraid to get a second opinion, many of us do that.
If you have confidence in your doctor and the doctor wants you to stay on IVIG’s for awhile longer, say three months, listen to him/her. I have CIDP and I rarely felt stronger and better. ANOTHER VERY VERY IMPORTANT PURPOSE FOR IVIG’S IS TO “CONTROL” THE PROGRESSION OF CIDP, that’s what the infusions did for me. Many of us need more then the “five day loading” to find out if it’s going to work.
Welcome to your new family where we feel what you feel. Don’t be discouraged if you don’t start feeling improvements right away because another very very important purpose of IVIG is to “CONTROL” the progression. That’s how it was with me. I usually felt only small improvements, what I called my “BIG little improvements”, but today CIDP is no longer progressing for me and I remain stable.
Look at a recovery in months and years, not days and weeks, then in about two/three years look back.
Have you joined the GBS/CIDP forum in the UK also? What we call “crossing the big pond”. Both sides of the pond can meet.
Welcome to your new family where we feel what you feel. I saw one of the top rated neurologists in the US for a consultation and since a year, possibly more had gone by before I was diagnosed; the first thing he told me was that it’s NEVER TOO LATE!
Try one of these neurologists. I don’t know what their knowledge is of CIDP, but they do know neuropathy’s.
Jonathan Glass….. Emory University School of Medicine
Keith Sanders….. don’t know what hospital he’s associated with
BOTH FROM ATLANTA
One thing I’ve learned to look for when I need a new neurologist iis how accessible the building and office is……….are their ramps or steps…..bathrooms……cramped waiting room or large and roomy. If wheelchairs can move around, there’s a good chance this doctor has treated severe CIDP.
I’ve had CIDP since 1998, just remember that we do have hope. We may never fully heal so that we can go back to what was our “old” normal, but we can improve and get better and learn how to make a “new” normal.
Come here and talk to us whenever you need to. Welcome to your new family where we feel what you feel.
I just wanted to say welcome to your new family where we understand because we feel what you feel. If you give it enough time, there might be another member who is near the Dallas area. We do have members from Texas. It took about six months after a diagnosis of a neuropathy for it to be confirmed that I had CIDP. Give a positive diagnosis time, it does sound like you have a good neurologist. One of my falls was like yours, stepping down a curb. My poor scared mother had to run into a store to get help. Many of us can understand what the treatments are going to cost you when you don’t have insurance. Have you tried to see if you would qualify for needymeds.com? Low cost medical help and you could also call the companies that make the medications you need, like the IVIG’s. Your infusion nurse could tell you what brand you are getting. Sometimes the pharmacy company will give you a break in price.
We’re here whenever you need us. We laugh together, cry together and what we need many times, we can vent our frustrations.
Gene will probably reply and he’ll probably have more Dr.’s names for you, but these are two names I got from another GBS/CIDP site that has a doctor referral so they do have a knowledge of GBS. Have you tried seeing either of these neurologists? Yadollah Harati at Baylor College of Medicine in Houston and Aziz Shaibani at Nerve and Muscle Center of Texas, located in Houston.
I have another syndrome CIDP, so I can’t help too much with GBS, but I can really relate to the stomach burn and sleepless nights, which is usually caused by medications we need to take. If you need the medication, then this is something we must endure. My stomach burn ended when I was able to come off of prednisone. If you are trying to take anti-acids to ease the stomach burn, BE CAREFUL with them. I was taking TOO many and ended up in hospital with bleeding ulcers. Maybe an ulcer medication, rather then over-the-counter anti-acids will help. Try asking your doctor. Even though my stomach burn is gone, I still can’t get a good nights sleep because of the numbness I have and the way my legs feel.
Welcome to your new family where we understand because we feel what you feel. If you only joined the discussion boards, please go to the main page and register for the GBS CIDP Foundation as well. You can find them at gbs-cidp.org
They will send you helpful information. If you will let us know where you live, nearest big city, some of us will do a search and try to help you find a neurologist who has excellent knowledge of GBS. We may even be able to find a member who lives near you. Your husband does need to have his pain meds increased until he finds the level that helps.
We’re here for you to talk to,
Welcome to your new family, where we feel what you feel. Give others time to answer your post. It doesn’t mean that we don’t care when it takes a few days. WE DO CARE and will help as much as we can. I have had CIDP for nine years now and I am one of the people who was severly damaged. You may need to have the IVIG’s on a regular basis. Some of us have them every two weeks, some have them three days in a row, then skip a week, some of us can go for a month or longer before we need them again. The next time you have an IVIG, start to keep a diary so you know how long it takes before you feel weak again. This will help you learn how often you will need them. Nobody likes getting the IVIG’s, but if it helps, you do it. I hope you have a good doctor you can talk to and I hope he knows about CIDP and if he doesn’t know too much, a good doctor will want to learn. Tell your doctor how you feel, this must come from you. He can’t look at you and know what you are feeling.
Come here to your new family to talk as many times as you want to. Here is a friendship rose for you.
Welcome to your new family where we feel what you feel. I’m not really good at searching through the archives the right way, so what I do when I have time to sit at the computer is to just choose GBS or CIDP, go back to the beginning, scroll through slowly and just keep clicking on things you might be able to relate to.
If you go to the main page of this foundation, not the forums (gbs-cidp.org), you can click on the STORE and look for some books. One of my favorites is “Numb Toes and Other Woes”, written in plain language, easy to understand.
If your doctor feels you need to get IVIG’s and stay on them for awhile, you can find out if they can be done at home so you won’t have to make a long drive.
More time passing will tell whether you have GBS or CIDP.
And welcome to your new family where we feel what you feel. These support groups are from another site, the Neuropathy Association and they might help you. They do help people with CIDP, but our forum family is much better then theirs 🙂
SACRAMENTO: meetings held at Northminister Presbyterian Church, for details call Anne Fletcher 916-391-3317
ELK GROVE: held at Elk Grove Senior Center, call Michael Colozzi 916-421-8103
You have a full plate of problems and I wish from my heart that I had answers for you, but I don’t. Maybe one of our members DOC DAVID will see your post and respond with whatever help he can offer. If it is CIDP that you have, it sounds like you’re saying prednisone, IVIG’s and PP’s can’t be used and those are the CIDP treatments most commonly used. Many of the cancer treatment drugs can be used.
Until you find out what is wrong, we’ll try to help and support you.
I am one of the members with CIDP. I think we are all told that there is no cure, so if “recovering” means you are cured, you don’t recover. But, the good news, if “recover” means you get better and stronger, then you do recover. IVIG’s are usually tried first and the purpose of the IVIG’s is not to cure you, but to CONTROL the progression of CIDP. And we do have HOPE, because once the progression is controlled, we can HEAL and we can become almost as good as new.
I was diagnosed with CIDP in 1998 and I stopped progressing. I have remained stable and have not needed any syndrome medications since 2003, but since I was severely damaged, I will be left with alot of residuals. Someone with mild damage, could probably heal almost 100%.
NEVER EXPECT TOO MUCH TOO SOON THOUGH, healing comes slow, look to months or years, rather then days or weeks.
You’ve made the first step by coming here to talk to us. We become a big family who will help as much as we can.
I can understand how you feel about wanting to continue helping your husbands mother. My mother is 87 and not well. I live with her and as long as we are able to care for her in her home, she will not go to a nursing home. It is not easy for me though because I have the syndrome called CIDP and still depend on a wheelchair and a home care agency. It’s difficult for me to take care of myself and put my own needs first. You just have to remember though that if you don’t take enough time to care for yourself, you cannot care for others.
Caring for yourself has to be your first priority. Relax in a bubble bath.
Since the financial burden is falling on you, I think that should be your second priority, learn what you can handle though, don’t let yourself burn out. Find out if your husband can apply for SSDI and if the costs of mediications are a problem, go to a site like needymeds.com
See if you can make one day a week the special day to spend with your children, bake a cake or cookies together that you can take to daddy. Fun ideas will come to you.
Don’t push yourself to go to your husband every day. These new cell phones do so much now, if you can afford one for your husband and one for yourself, it’s a way you can see each other and say good morning and good night.
Not one of us here will think you are a bad wife or a bad mom.
Here’s a group hug,