A couple of quick questions. What dose were you on and how long were you on it?
roserider said:
Henry
Thanks for the comments. I am very sympathetic to your situation. My doc extended the IVIG treatment cycle from my usual 3 weeks to 5 weeks, not believing I would go down hill much, and I really crashed in weeks 4 and 5. I cannot get around without a walker, having fallen 4 times before going over to the walker. As for picking up my feet, it is impossible as you know. It is like having lead bricks strapped to your legs. I cannot even lift my left leg from the floor when I am in a sitting position. I had infusions over the past couple of days and expect to get much better before long as we are going back to the 3 week cycle. Before the 5 week test between infusions, I was walking fine, exercising at the gym, driving, horseback riding, etc. so hope to enjoy a few more years of these activities before the disease progresses to the point where I am unable to do so.
Weight gain with pred seems very common but fortunately I am very thin now so a few extra pounds won't hurt. I haven't heard of the eye changes before nor the tremor problems. I am currently having a lot of tremor problems; I basically had none before this last extended cycle. Bone loss also seems to be a common. side effect for pred.
Good luck in living with your CIDP.
Roserider
Henry said:
Hi Roserider, when I was on both Prednisone & IVIg, I did start to get some sensation back in my hands and feet, but the Neurologist discontinued the IVIg because it was making my Pulmonary Fibrosis worse. They've also started to reduce the prednisone, because it was weakening my muscles. They went to a "non-steroidal immunosuppressant", (Imuran) but that made me very sick, as I've mentioned before. Now they are thinking about going to CellCept.
My side effects from prednisone were a 50 pound weight gain (I've since lost 23 of those pounds); vision changes and some worsening of my hand tremors, not to mention the muscle myopathy.
Although my physical rehab is helping maintain some muscle tone, it is not helping the CIDP. My feet are very bad (numbness, loss of sensation and some muscle cramping), so much so that I have fallen twice in the last 2 weeks. Fortunately, I got nothing worse than a couple of bruises. Today, my wife told me to "pick up my feet" while we were walking from the car to the restaurant (I was using the walker), because I was scuffing my feet. but I couldn't stop, because I couldn't lift my legs any higher.
I am new here. After reading these posts I feel at home here. I got my first symptoms in 2003. I got progressively worse and couldn’t walk after the first year. Then the prednisobe and ivig. Started getting better and for a few years I thought I could handle this disease. Dummy me. So many times to the ER for pain… or losing all feeling in my legs. The doctors in the hospital never heard of Cidp. That happened so man times. In short… I have had symptoms get worse. And get better. Up and down thru the years. Prednisone being the only drug to have immediate results. I took 6mp. For a year too. Right now I am worse then when it all started but some of the really bad symptoms are gone for now
I took part in this survey also. The one thing that I really related to was the use of steroids and the adverse side-effects. I got severs oestesperosis from t.those many months off and on. I have had many broken bones over the past 7 years. This has caused more disability for me. I hope others are more aware now of this one of many side-effect.
Hi Bobbi, I too got CIDP from the H1N1 vaccine in 2010. I also live in Minnesota. I currently see a specialist for CIDP at the University of Minnesota. If you don't get good results at the Mayo Clinic then you should look into the University of Minnesota Neurology Department. I have been lucky. Started IVIG within 5 months of onset of symptoms. I have minor symptoms but the IVIG I get every 21 days seem to keep the disease in check. I have not progressed any more since I was diagnosed. But I am not normal or as I was before CIDP. I get tired easy, sometimes if I over do it my legs ache and feel very creepy-crawly at night keeping me awake, I also get burning sensations on my hands when I get close to my 21 day mark for IVIG. But I guess I can count my blessings as I am going along with my life as before CIDP just having to slow down a little bit and be aware of my disease. As for tuning out. I understand completely. My family always asks how I am doing but when I answer or talk about a symptom then glaze over and tune me out or change the subject very quickly...even my husband doesn't want to hear about my disease. He just wants to go on like I am healthy. I think he can't deal with the fact that it is chronic and won't ever go away. So I have found I need to suffer in silence and just answer to them that all is ok.
I was diag last year I think in Feb or March, but had the syimtoms for probably 5+ years just putting up with what ever this was at that time, I had thought I had neuropathy same as my sister, our mom and we think our grandma too. We are not diabetic either. Then I read/heard that CIDP is not hereditary (I can't spell - sorry).
I tryed the IVIG for 5 days, not in a row, but 5 days scattered over 2 weeks b/c I came down with a fever and my Neurologist suggested for it to be over 2 weeks. BUT I also came down with bad BAD headaches and I drank tons of water before treatment too. Now I have been waiting to see a professor at a University to see what he has "in his bag of tricks" so my neuro said, he said he has done all that he knows what to do with me. FINE with me! I need to find somone that deals with CIDP. This neuro didn't even have any paper info for me to read as I knew nothing about CIDP and never heard of it!!! Which brings me to my point...
Has any one ever heard of any "stars" with CIDP or any one that is popular that every one knows?????
When it is anounced that someone like that comes down with this and if they want to tell the world then people WILL at least hear about it and we won't be put in that catagory "but you don't look sick"! I hate that too!!
Hello Pauline , It can be very discouraging when people don't understand what is going on with us . I too have had Cidp for many years but only diagnozed last September , I have had several courses of IVIG . Unfortunatly it is not working for me and I continue to get worsening symptoms , My Neuro has told me to stop getting it and to see her soon , She is an awesome Neurologist who specializes in this disease , She has told me the ere are so many Neurologists who don't understand it One must go to Neuro muscular Doctor which is her specialty not just a Neurologist.
I have not heard of anyone famous with the disease but I agree it If soemone like that ( and I would not wish it on them) had it then it would be brought to the publics attention and it would help all understand a bit more . It is different for us all and soem people get good results with IVIG , From my experience it is harder to treat the longer one goes undiagnosed , It was about ten years before I got my diagnosis
I wish you well
Mary Pauline said:
Hi All!
I was diag last year I think in Feb or March, but had the syimtoms for probably 5+ years just putting up with what ever this was at that time, I had thought I had neuropathy same as my sister, our mom and we think our grandma too. We are not diabetic either. Then I read/heard that CIDP is not hereditary (I can't spell - sorry).
I tryed the IVIG for 5 days, not in a row, but 5 days scattered over 2 weeks b/c I came down with a fever and my Neurologist suggested for it to be over 2 weeks. BUT I also came down with bad BAD headaches and I drank tons of water before treatment too. Now I have been waiting to see a professor at a University to see what he has "in his bag of tricks" so my neuro said, he said he has done all that he knows what to do with me. FINE with me! I need to find somone that deals with CIDP. This neuro didn't even have any paper info for me to read as I knew nothing about CIDP and never heard of it!!! Which brings me to my point...
Has any one ever heard of any "stars" with CIDP or any one that is popular that every one knows?????
When it is anounced that someone like that comes down with this and if they want to tell the world then people WILL at least hear about it and we won't be put in that catagory "but you don't look sick"! I hate that too!!
You said you have not heard of anyone famous with the disease. Well, some time ago I read that FDR might have actually had CIDP, rather than polio, as they thought at the time. A couple of years later, I went to a talk on CIDP by a professor of neurology at a nearby medical school. I asked if she thought there was any chance that FDR had CIDP. She said that she thought it was very likely - the symptoms and the way it came on were not really typical of polio, but could be symptomatic of CIDP. Of course, we will never really know, but it is interesting to speculate.
Bill
Mary said:
Hello Pauline , It can be very discouraging when people don't understand what is going on with us . I too have had Cidp for many years but only diagnozed last September , I have had several courses of IVIG . Unfortunatly it is not working for me and I continue to get worsening symptoms , My Neuro has told me to stop getting it and to see her soon , She is an awesome Neurologist who specializes in this disease , She has told me the ere are so many Neurologists who don't understand it One must go to Neuro muscular Doctor which is her specialty not just a Neurologist.
I have not heard of anyone famous with the disease but I agree it If soemone like that ( and I would not wish it on them) had it then it would be brought to the publics attention and it would help all understand a bit more . It is different for us all and soem people get good results with IVIG , From my experience it is harder to treat the longer one goes undiagnosed , It was about ten years before I got my diagnosis
I wish you well
Mary Pauline said:
Hi All!
I was diag last year I think in Feb or March, but had the syimtoms for probably 5+ years just putting up with what ever this was at that time, I had thought I had neuropathy same as my sister, our mom and we think our grandma too. We are not diabetic either. Then I read/heard that CIDP is not hereditary (I can't spell - sorry).
I tryed the IVIG for 5 days, not in a row, but 5 days scattered over 2 weeks b/c I came down with a fever and my Neurologist suggested for it to be over 2 weeks. BUT I also came down with bad BAD headaches and I drank tons of water before treatment too. Now I have been waiting to see a professor at a University to see what he has "in his bag of tricks" so my neuro said, he said he has done all that he knows what to do with me. FINE with me! I need to find somone that deals with CIDP. This neuro didn't even have any paper info for me to read as I knew nothing about CIDP and never heard of it!!! Which brings me to my point...
Has any one ever heard of any "stars" with CIDP or any one that is popular that every one knows?????
When it is anounced that someone like that comes down with this and if they want to tell the world then people WILL at least hear about it and we won't be put in that catagory "but you don't look sick"! I hate that too!!
Good dialogue by everyone. Thanks for the hutspah in your note, Pauline, and we sure do need each other, folks...
Mary said:
Hello Pauline , It can be very discouraging when people don't understand what is going on with us . I too have had Cidp for many years but only diagnozed last September , I have had several courses of IVIG . Unfortunatly it is not working for me and I continue to get worsening symptoms , My Neuro has told me to stop getting it and to see her soon , She is an awesome Neurologist who specializes in this disease , She has told me the ere are so many Neurologists who don't understand it One must go to Neuro muscular Doctor which is her specialty not just a Neurologist.
I have not heard of anyone famous with the disease but I agree it If soemone like that ( and I would not wish it on them) had it then it would be brought to the publics attention and it would help all understand a bit more . It is different for us all and soem people get good results with IVIG , From my experience it is harder to treat the longer one goes undiagnosed , It was about ten years before I got my diagnosis
I wish you well
Mary Pauline said:
Hi All!
I was diag last year I think in Feb or March, but had the syimtoms for probably 5+ years just putting up with what ever this was at that time, I had thought I had neuropathy same as my sister, our mom and we think our grandma too. We are not diabetic either. Then I read/heard that CIDP is not hereditary (I can't spell - sorry).
I tryed the IVIG for 5 days, not in a row, but 5 days scattered over 2 weeks b/c I came down with a fever and my Neurologist suggested for it to be over 2 weeks. BUT I also came down with bad BAD headaches and I drank tons of water before treatment too. Now I have been waiting to see a professor at a University to see what he has "in his bag of tricks" so my neuro said, he said he has done all that he knows what to do with me. FINE with me! I need to find somone that deals with CIDP. This neuro didn't even have any paper info for me to read as I knew nothing about CIDP and never heard of it!!! Which brings me to my point...
Has any one ever heard of any "stars" with CIDP or any one that is popular that every one knows?????
When it is anounced that someone like that comes down with this and if they want to tell the world then people WILL at least hear about it and we won't be put in that catagory "but you don't look sick"! I hate that too!!
I refuse to give up hope! I showed symptoms in December of 2010 and was diagnosed with GBS only to find out that I have CIDP 6 months later. To find a doctor that has time and cares was the first problem. Thanks to the Mayo Clinic in Rochester MN I received IVIG and got slowly better. I was numb from the big toe to the chest and half of my face. Now thinking about it, internaly things were also going wrong. I was too sick to think. Without the Neurologist at the Mayo Clinic, I believe I would not be here today. I hope I keep gaining more strength to be able to walk without a walker on grass again, and to drive my 9 year old daughter to any activities she wants to join. In 4 months I went from strong like a horse to not able to care for myself. I am finaly to the point that I am looking for more stories and answers online. I will be at the Mayo Clinic next week with hopefully some good news. I hope to hear more positive news and wish for help for all of us. I am thankfull that I can type again and glad for this support group.
Your entry touches my heart. When I got diagnosed many years ago, nobody knew diddley about CIDP. My son was only 10 and I wanted so desperately to throw a ball with him or go to the mall and help him shop for Christmas presents or stroll the mall. One particular day, I was so sad and was determined to drive to the nearby shopping center and got ready. My son was so excited and we set out. I got to the mall and started to open the door but couldn't. I had no strength, no ability to do anything. I looked in my son's eyes and saw the sadness...he tried to cover it and said "oh mom, no problem." But that sweet face was disappointed; but better days were coming! He is now 26. He has just returned to the states from his 4th deployment, and I am still alive and kicking. I have an 11 year old grand-daughter from my daughter, and although I cannot do many things, I can do some things, and I have not given up either. I am hoping that you will recover ground and be active with your daughter very soon...until then, just being close, reading together, doing a craft or doing homework together can be fun...it's tough I know; but you will make it:)
Carli said:
I refuse to give up hope! I showed symptoms in December of 2010 and was diagnosed with GBS only to find out that I have CIDP 6 months later. To find a doctor that has time and cares was the first problem. Thanks to the Mayo Clinic in Rochester MN I received IVIG and got slowly better. I was numb from the big toe to the chest and half of my face. Now thinking about it, internaly things were also going wrong. I was too sick to think. Without the Neurologist at the Mayo Clinic, I believe I would not be here today. I hope I keep gaining more strength to be able to walk without a walker on grass again, and to drive my 9 year old daughter to any activities she wants to join. In 4 months I went from strong like a horse to not able to care for myself. I am finaly to the point that I am looking for more stories and answers online. I will be at the Mayo Clinic next week with hopefully some good news. I hope to hear more positive news and wish for help for all of us. I am thankfull that I can type again and glad for this support group.
Thanks for your kind reply. I will stay positive and beat the negative. The visit yesterday at the Mayo was good news. It looks like I have my upper body back and I have gained a lot more strength obove my knees. I just hope and pray it keeps on going.
Lori said:
Carli,
Your entry touches my heart. When I got diagnosed many years ago, nobody knew diddley about CIDP. My son was only 10 and I wanted so desperately to throw a ball with him or go to the mall and help him shop for Christmas presents or stroll the mall. One particular day, I was so sad and was determined to drive to the nearby shopping center and got ready. My son was so excited and we set out. I got to the mall and started to open the door but couldn't. I had no strength, no ability to do anything. I looked in my son's eyes and saw the sadness...he tried to cover it and said "oh mom, no problem." But that sweet face was disappointed; but better days were coming! He is now 26. He has just returned to the states from his 4th deployment, and I am still alive and kicking. I have an 11 year old grand-daughter from my daughter, and although I cannot do many things, I can do some things, and I have not given up either. I am hoping that you will recover ground and be active with your daughter very soon...until then, just being close, reading together, doing a craft or doing homework together can be fun...it's tough I know; but you will make it:)
Carli said:
I refuse to give up hope! I showed symptoms in December of 2010 and was diagnosed with GBS only to find out that I have CIDP 6 months later. To find a doctor that has time and cares was the first problem. Thanks to the Mayo Clinic in Rochester MN I received IVIG and got slowly better. I was numb from the big toe to the chest and half of my face. Now thinking about it, internaly things were also going wrong. I was too sick to think. Without the Neurologist at the Mayo Clinic, I believe I would not be here today. I hope I keep gaining more strength to be able to walk without a walker on grass again, and to drive my 9 year old daughter to any activities she wants to join. In 4 months I went from strong like a horse to not able to care for myself. I am finaly to the point that I am looking for more stories and answers online. I will be at the Mayo Clinic next week with hopefully some good news. I hope to hear more positive news and wish for help for all of us. I am thankfull that I can type again and glad for this support group.
I think treatment slows the course. I have had this since 1/2007 and started IVIG three years ago. I am worse than I was when I started but the year and half when I was undiagnosed, I was progressing faster. I wish I could say that treatment made me better