HI everyone my name is JOHN.I`am 60 years old and was just diagnosed with CIDP in late july of this year.Up till then I was playing golf 7 days a week and living a wonderful retired life in florida.Now I am barely able to walk with a cane.My hands are totally numb as are my feet and legs.I just got out of the hospital after a 7 day stay.First time I have ever been in a hospital.Had the VIGI treatments for 5 days.I feel no better now then when I went into the hospital.Was really hoping for some improvement but it wasn``t so.I`am just wondering if I expected to much to soon????
Anyway its nice to find this sight where I don`t feel so alone.I`am scared and mad that I have this terrible condition.I can only pray that their will be light at the end of the runnel.
Hi John, firstly welcome, am fairly new here too. I was diagnosed at the age of five and after exhausting all treatments there are for CIDP, not one of them has helped me in any way so I totally understand how you are feeling.
I was diagnosed with CIDP in June of 2012. It sounds like the same scenario as you. Active 63 year old, hiking, golfing and enjoy the Tucson weather when it hit me. I have been getting IVIG treatments approximately every 6 to 8 weeks (first time was in the hospital, like you for 9 days). I now go out patient to a local oncology infusion department at the hospital for 2 days (4 hours each). I am lucky that the IVIG seem to effectively work for me the first time. I have had some bad episodes and have learned to REST, drink plenty of fluids before infusions and RELAX. Eating a healthy diet, and realizing that this disease isn't going away and learning to look for the warning signs, has helped tremendously. Take heart.... it will get better.
I was diagnosed with CIDP over 2 years ago at the age of 75. When I was diagnosed, I could not stand or walk, I was in a rehab center for 5 weeks where I was taught to transfer from my bed to the wheelchair, then to walk on numb but very painful feet with the aid of a walker. I was also taught to dress myself with numb painful hands. Needless to say everything was pull on. I had intensive home physical therapy for 6 months in order to care for myself. After that, I was hospitalized and given IVIG for 5 days with no improvement. However after about 3 weeks it kicked in and I had some feeling in the bottom of my feet, enough to allow me to thankfully drive again. That is about the only results I have had even after a second round of IVIG. I am thankful that I can once again drive and live on my own.
Thanks every one for the warm welcome.All I can do is give this my best shot and fight to gain my life back again.Its so crazy I have never ever been sick a day in my life and now this happens.As a side note I fell today luckily I didn`t get hurt.
Hi John, I too was hospitalized and received IVIGs for 5 days straight, to no avail. As time went on I found it difficult to find a nuro who treated CIDP and prescribed IVIGs. Not all nuros do, much to my surprise. I found a good nuro and by trial and error found the right dosage and frequency for the IVIGs. I am on 70 grams, every three weeks. I'm doing ok, not great, but grateful to be ok. It takes time and patience to find the right dosage and the right frequency for the infusions. I'm sure in time you will find what's right for you. Good luck to you !!!!
Hi John… I am sorry you are going thru this. Our disease is a devastating one. Especially when you are use to being an active person. I have had it for 12 years. Without going into a long story… My first treatment was IVIG for 5 days in the hospital & then about every 3 months. Recently my Dr changed my IVIG from Gamagaurd to Gammunex… I started to go down hill… I ended up in paralysis.They ended up changing my treatments to plasma pharesis. It only works for a short time for me. I have spent 2 weeks out of every month in the hospital for the past 3 months… I am now having them out my back on the Gamagaurd. My point is they need to try different treatments for you. Unfortunately what works for one of us doesn’t work for another. Don’t worry… Once the find the treatment that works for you then you should be able to go play golf again. Conserve your energy & try to stay positive. We are all here for you… Btw I am now 35… Diagnosed at the age of 22… It was devastating.
Welcome! I just joined the group and it has been a real encouragement to me and I hope it will be for you too.
I am 63 and was diagnosed with CIDP recently even though I have lived with neuropathy for many yrs. I have had two rounds of IVIg with small success. My neuro put me on Cymbalta which initially helped some with the nerve pain. I am also on Lyrica and Lunesta to help me sleep.
John welcome and don’t dispair recovery is very slow but with Physio and medication it will happen. My guy is about to start steroid therapy which has pretty good results we have heard when combined with IVIG. Keep up your healthy lifestyle. M
Welcome John, I have had CIDP since 2009 and my Dr. has had to change the dosage and length between my IVIG infusions various times these past years. I know how difficult it is to go from being a healthy, active person to someone who is dependent on others for help with everyday tasks. It is a very slow healing process. The best advice I can offer you is to keep an open dialogue with your Dr. and caregivers and to try to focus on something positive every day. It does get better, I'm not sure if coming to terms with this disease is the reason for that or not. Hang in there and take care of yourself.
Welcome John, I have had CIDP since 2009 and my Dr. has had to change the dosage and length between my IVIG infusions various times these past years. I know how difficult it is to go from being a healthy, active person to someone who is dependent on others for help with everyday tasks. It is a very slow healing process. The best advice I can offer you is to keep an open dialogue with your Dr. and caregivers and to try to focus on something positive every day. It does get better, I'm not sure if coming to terms with this disease is the reason for that or not. Hang in there and take care of yourself.
Hi John, I just joined this group too. I was SO glad to be able to read other peoples stories and find out there are people like me! I was diagnosed almost 2 years ago, but the disease had been going on for about 4 years before it hit the 'chronic' state about 2-1/2 years ago. I was given the Solu-medrol infusion followed by methylprednisolone orally. I'm not any worse, but not much better either. Like you, I was used to being very active, working, raising two grandsons, helping my husband in his beekeeping business, being a grandma. Thanks to this group I have had the courage to stop seeing the neurologist I was seeing (his parting words were "you just have to learn to deal with the pain") I'll be meeting with my new primary doc (my other one left for a different location) and am going to request a referral to Mayo and hope for better results.
Hi John,
IViG can take a month or two to kick so don’t get discouraged. Everyone is correct you have to find the right frequency and dosage that works for you. I’ve had CIDP for 10 years and have been on many treatments. There are other options besides IVIG and/or combinations to accompany it. Steroids are one but not great for long term. Plasmapharesis is another. Immunomodulators such as Imuran and Cellcept can be used with IVIG. It’s trial and error thing to see what works best for you. That takes time. Last year, I had a Stem Cell Transplant at Northwestern in Chicago.It is a clinical trial sponsored by the NIH. So far, I’ve been off all treatments and doing well. It may be future treatment if approved by the FDA. Most who have had it are in long term remission. I wish you the best and hope you find the right treatment soon. Mary B.
Mary, I'm so excited about your transplant success. I'd like to send you a friend request. Would that be ok with you. If so, pls. send me your name in an email and I'll search for you on FB. ■■■■■■■■■■■■■■■■■■■■■. thank you
Thanks every one for your words of wisdom.It is very easy to get discouraged but I will push on and try my best to get better soon.I really like my neurologist and believe he will have the correct treatment for me,I see him next monday.It hasn`tr been even 2 weeks since I`ve had my IVIG treatments.I guess time will tell.
Hang in there my friend. My son was diagnosed a year ago at the age of 22. Things were pretty rough until the Dr. found the right frequency and dosage for IVIG. My son is investigating the stem cell transplant research at Northwestern in Chicago that Mary talks about in the previous post. Went for his first round of tests the beginning of the month and it looks like he will be a good candidate for the transplant. Looks like a difficult process, but a happy ending. Hope that you will soon find the right dosage and frequency for your treatment. missbeth
Hi John, my name is Gary and I'm 64. My CIDP started in 2005 and it took six years to get a diagnosis. At least now I know what I'm fighting. I have trouble walking with a cane also, but I refuse to use a walker or scooter, I'm determined to do things on my own and it took three years to get the right dosage and frequency for my IVIG. Good Luck, Gary
I know it is hard to have to use a walker or scooter. You try as hard as you can to keep from doing so but safety is a priority. If using either will keep you from taking a fall then that would be better. Also, I used a scooter at stores so I could save my energy for other things. Using equipment that way really serviced me in the long run.
Well with my cane I've only fallen once in the last year, so I'll keep doing what works for me as long as possible. Besides it's good exercise and I sit and rest whenever necessary. Gary
Hello John,
I am 60 and was diagnosed this past Spring. I didn’t have any symtoms until I had to have 4 units of blood put into me after having bleeding ulcers. Had numb feet a day after that happened while still in the hospital. Got worse and started getting terrible burning feet even tho they felt numb. Sent to a nuerologist and tested. Then a spinal tap confirmed me having CIDP. He put me on the steroid infusions ( methylprednisolone) once a month. Also I take Lyrica to help the foot burning. So far these are helping me and I feel much better. Doc tested me again and said things are working for me. This is a hard disease to understand and you need a good nuerologist to help you. Keep a good attitude and enjoy each good day you have and always remember that there are a lot more people that have it a lot worse than yourself. Be grateful that you had 59 years without any problems like this. You might be hoping too soon for improvement. Give things time to work. Nerve repair is slow. Lots of luck and hope you get back to hitting that little white ball again.