Hi, I’ve had cidp now since 2008, I’m currently using s stick to get about but it’s getting harder to manage, I know this is a hard one to answer but how long did it take for you to be using a wheelchair?
I have had it since October 2014 and use sticks and walker. Trying to avoid wheelchair. Hate it when I fall.
My progression is probably unusually fast, but it took about 6 months to have progressed enough for me to need a wheelchair.
Have you tried the foot lift you can buy on Amazon.com. I’ve been thinking about a wheelchair myself but I think the important thing is to keep as active as you can. You shouldn’t be getting worse if you are being taken care of properly. IVIG and prednisone should at least stop the progression, unless you had a lot if damage before you started thera.
Try a Roll-a-tor. It’s a walker but with big wheels and a seat if you get tired. It helps a lot with balance.
I was diagnosed June 2013; treated with ivig then 2 wks rehab & sent home.it had affected my arms. 2 wks later relapsed- arms were again weak but so were legs-couldnt do even one step going upstairs; breathing & swallowing, bladder & bowels affected & some facial numbness. legs were weak enough within a few days i couldnt walk- even with a walker so started using a wheelchair then- early august. was treated again with ivig & put on prednisone for a few months-it didnt help. ivig was every 4 wks until april, when it was increased to every 3 wks. in neuro-muscular rehab from august to november- which helped a lot. now have pain due to osteoarthritis so cant walk for more than 5 minutes. spend all my time in the chair. in process to have hip replacement surgery- possibly by Christmas. we (including neuro) are all hoping i should be able to graduate to walker after surgery but it will be a long recovery. epidural used during surgery is very likely to cause legs to relapse. but worth it to be rid of pain. i plan to push myself so i can walk with a cane or even unassisted. also want to swim again. will not give up.
dx in 2010, and due to all the falls I was using a wheel chair in 2012, and now upgraded to power wheel chair due to strength issues. And now my neuropathy has improved in my arms and my spine looks a mess. Several bulging disc in the lumbar spine but no pinched nerves, and narrowing of the spinal chord. All since my CIDP started getting worse and I started falling.
None of this was in the MRI's in 2009, and now that my spine is all torqued up my They are say that it appears that I do not have CIDP at this time. Still have more tests to do, and EMG still shows mild neuropathy with axonal damage. So now for the moment it is MGUS with neuropathy.
What a crazy thing. The more I fall, the more my back gets messed up and the neuropathy improves. I do not recommend falling. It is quite painful.
I’ve had no treatments except lyrica & a fentanyl pain patch! Only now after 6 years of symptoms, 4 since diagnosis, numerous NCS tests, a sural nerve biopsy and a scheduled lumbar puncture are my Drs discussing ivig, up until four weeks ago I had never even heard of it! Steroids are a no go for me since I have gained 60+lbs with lyrica. Many falls, poor balance, no reflexes in ankles or knees. I’m just wondering what’s ahead for me in this, I feel like I’ve been sent away n forgotten about!
How old are you?
BBarbie said:
I was diagnosed June 2013; treated with ivig then 2 wks rehab & sent home.it had affected my arms. 2 wks later relapsed- arms were again weak but so were legs-couldnt do even one step going upstairs; breathing & swallowing, bladder & bowels affected & some facial numbness. legs were weak enough within a few days i couldnt walk- even with a walker so started using a wheelchair then- early august. was treated again with ivig & put on prednisone for a few months-it didnt help. ivig was every 4 wks until april, when it was increased to every 3 wks. in neuro-muscular rehab from august to november- which helped a lot. now have pain due to osteoarthritis so cant walk for more than 5 minutes. spend all my time in the chair. in process to have hip replacement surgery- possibly by Christmas. we (including neuro) are all hoping i should be able to graduate to walker after surgery but it will be a long recovery. epidural used during surgery is very likely to cause legs to relapse. but worth it to be rid of pain. i plan to push myself so i can walk with a cane or even unassisted. also want to swim again. will not give up.
59 years old. had right hip replacement sept 2011. now its time for the left hip. osteoarthritis Dx hips, hands.
& neck.
R.j. Stoll said:
How old are you?
BBarbie said:I was diagnosed June 2013; treated with ivig then 2 wks rehab & sent home.it had affected my arms. 2 wks later relapsed- arms were again weak but so were legs-couldnt do even one step going upstairs; breathing & swallowing, bladder & bowels affected & some facial numbness. legs were weak enough within a few days i couldnt walk- even with a walker so started using a wheelchair then- early august. was treated again with ivig & put on prednisone for a few months-it didnt help. ivig was every 4 wks until april, when it was increased to every 3 wks. in neuro-muscular rehab from august to november- which helped a lot. now have pain due to osteoarthritis so cant walk for more than 5 minutes. spend all my time in the chair. in process to have hip replacement surgery- possibly by Christmas. we (including neuro) are all hoping i should be able to graduate to walker after surgery but it will be a long recovery. epidural used during surgery is very likely to cause legs to relapse. but worth it to be rid of pain. i plan to push myself so i can walk with a cane or even unassisted. also want to swim again. will not give up.
I’m 39!
That’s the spirit, try not to give up.
the only thing i have quit was smoking sept 2011. gave 30 yrs of my life to that cause. now i want to give 30 yrs+++ to something healthier. made it this far - no way am i giving up. life can be tough- but i'm tougher. :-)
Membrey said:
That's the spirit, try not to give up.
I don't know what to think, but have never given up. Now they are telling me that at this moment I do not have CIDP. I use a cane to move around the house because it is not really suited for my wheelchair. As a result I have fall over 100 times in the last 3 years, and my spine looks like it. So the question is if I get my spine realigned and do something about the narrowing of the cord, are my CIDP symptoms going to come back with a vengeance? I thought I was going into remission, but apparently the more out of whack my spine got, the more my CIDP improved.
In 2010 my MRI's only showed one minor blip in the c-spine region that they attributed to an old accident.
definitely try a rollator. it will help you to balance & fall less. you have not had a lumbar puncture yet? that's how they confirmed cidp Dx for me. i keep telling myself the wheelchair is only temporary. if it isn't, it isn't. as long as i have arm & hand strength so i can take of myself, anything else is gravy.
bteeter said:
I don't know what to think, but have never given up. Now they are telling me that at this moment I do not have CIDP. I use a cane to move around the house because it is not really suited for my wheelchair. As a result I have fall over 100 times in the last 3 years, and my spine looks like it. So the question is if I get my spine realigned and do something about the narrowing of the cord, are my CIDP symptoms going to come back with a vengeance? I thought I was going into remission, but apparently the more out of whack my spine got, the more my CIDP improved.
In 2010 my MRI's only showed one minor blip in the c-spine region that they attributed to an old accident.
Do you mean October 2004 or October 2013?
Country Girl said:
I have had it since October 2014 and use sticks and walker. Trying to avoid wheelchair. Hate it when I fall.
Lumbar puncture was done in 2010 and that was what confirmed my CIDP diagnosis. But I have been getting better in the arms and my reflexes are coming back. I EMG's show mild peripheral neuropathy with demylination and axonal damage in both legs. Still waiting to redo c-spine MRI and new lumbar puncture. The newest lumbar MRI shows 5 areas of bulging discs with narrowing of the cord, two Tarlov cyst's and stenosis of the cord. This has all happened since 2010, and really the last 3 years when I started falling.
BBarbie said:
definitely try a rollator. it will help you to balance & fall less. you have not had a lumbar puncture yet? that's how they confirmed cidp Dx for me. i keep telling myself the wheelchair is only temporary. if it isn't, it isn't. as long as i have arm & hand strength so i can take of myself, anything else is gravy.
bteeter said:I don't know what to think, but have never given up. Now they are telling me that at this moment I do not have CIDP. I use a cane to move around the house because it is not really suited for my wheelchair. As a result I have fall over 100 times in the last 3 years, and my spine looks like it. So the question is if I get my spine realigned and do something about the narrowing of the cord, are my CIDP symptoms going to come back with a vengeance? I thought I was going into remission, but apparently the more out of whack my spine got, the more my CIDP improved.
In 2010 my MRI's only showed one minor blip in the c-spine region that they attributed to an old accident.
Hi Cair, I was diagnosed in October 2013 after a prolonged period of investigation and I have fortnightly IVig infusions. I have had a progressive run since September 2013 of using a stick, elbow crutches, a rollator walker and then a wheelchair. Although weakness was a part of it for me, the main reason was a series of pathological fractures in a 12 month sequence starting with my right ankle then right knee followed by my left knee. The fractures occurred with normal activity in bone that had become abnormal. The leg swelling, pain and lost muscle use contributed to my mobility problems while arm weakness eventually made the wheelchair necessary. Both neuro and ortho specialists are unaware of a connection between what they have labelled migratory bone marrow oedema syndrome (previously known as transient osteoporosis) and CIDP and they think I have just been unlucky. My own research however led me to speaking to two Australian osteo-immunologists who think there is a definite link - the inflammatory proteins involved in the peripheral nerve damage adversely affecting the bone health. This is apparently a relatively new area of science with no clinical application as yet. I 'm happy to provide anyone interested with the information provided to me if it would be helpful. I have just stopped using my chair in the last couple weeks and am now walking with a stick but not yet driving. The single most helpful thing for both the weakness and fracture recovery for me has been doing hydrotherapy three or more times a week. My program was developed and then updated by a physiotherapist who I now see monthly after initial weekly sessions. I now go to my local recreation centre which has a great hydrotherapy pool and is much cheaper. I would encourage anyone with CIDP to consider hydrotherapy to build and maintain muscle strength. Cair, I do hope things go well for you. Gina
Hi Cair, I was diagnosed in October 2013 after a prolonged period of investigation and I have fortnightly IVig infusions. I have had a progressive run since September 2013 of using a stick, elbow crutches, a rollator walker and then a wheelchair.
Although weakness was a part of it for me, the main reason was a series of pathological fractures in a 12 month sequence starting with my right ankle then right knee followed by my left knee. The fractures occurred with normal activity in bone that had become abnormal. The leg swelling, pain and lost muscle use contributed to my mobility problems while arm weakness eventually made the wheelchair necessary.
Both neuro and ortho specialists are unaware of a connection between what they have labelled migratory bone marrow oedema syndrome (previously known as transient osteoporosis) and CIDP and they think I have just been unlucky. My own research however led me to speaking to two Australian osteo-immunologists who think there is a definite link - the inflammatory proteins involved in the peripheral nerve damage adversely affecting the bone health. This is apparently a relatively new area of science with no clinical application as yet. I 'm happy to provide anyone interested with the information provided to me if it would be helpful.
I have just stopped using my chair in the last couple weeks and am now walking with a stick but not yet driving. The single most helpful thing for both the weakness and fracture recovery for me has been doing hydrotherapy three or more times a week. My program was developed and then updated by a physiotherapist who I now see monthly after initial weekly sessions. I now go to my local recreation centre which has a great hydrotherapy pool and is much cheaper. I would encourage anyone with CIDP to consider hydrotherapy to build and maintain muscle strength.
Cair, I do hope things go well for you. Gina
I was diagnosed with CIDP in November 2010 (and they're still not absolutely sure!), but mild symptoms started in February of 2008. Didn't need a cane till late 2012, then got a rollator in fall of 2013. Then also got a scooter for downtown appts in fall of 2013. In December 2013, after I got out of the hospital, l started needing a wheelchair for downtown appts because I can't easily drive, so I need rides. Last Friday, I had my scooter brought home, and it's now inside my house. Although it's pretty big for my small house, I prefer it over my rollator. But I don't want to give up my rollator and I can't afford an electric wheel chair. This whole situation is upsetting and just really sucks. (:-(. My home is a split entry and is not set up fior a disabled person.