Hey everyone Iam wanting to know what is your age,how long have you had CIDP, are you working,and what is your condition are you in a wheel chair,need help doing things or what. Not trying to Get in anyones private life I just would like to see what my future may bring. Also what meds or treatments. If Iam asking to much I understand. I just want to be realistic about how to prepare mental,financially,and everything else for the rest of my life. Iam a Autotech at a Dodge dealship, 42yrs old, Male,still working,Taking (oxycodone 3 times a day) and ( predisone 3 times aday)Diag with CIDP about 3.5 years ago. So far dont need help doing anything but I dont like asking for help.Thank You
Hi Knott,
I am 56.I have what turned out to be an unusually fast progreesing CIDP. 1st symptoms were in March,2012.I tried to get a diagnosis working with my Doc and trying to get appointments with new doctors. I am new to this site, but have noticed a common theme among many,if not most of us, that is how difficult and confusing it can be just trying to find out what's wrong. Making appointments with new doctors can take weeks, tests like MRIs, CT scans, PET scans, x-rays,etc all have to be scheduled.Meanwhile, I kept getting weaker and weaker and to be honest,more than a little worried.
By the end of June, I realized I was losing the race to what ever it was, so I took medical leave from work and got my Doc to get me admitted to Rush University Med. Ctr. in Chicago.
Within a week, I could no longer walk, and by the end of July, The only thing I could lift off the bed against gravity was my head. By mid August, I had received 4 different tentative diagnoses,3 of which were fatal. Part of what confused them was my total lack of response to IVIG.So, with my Rush neurologist's help, I got sent to Mayo Clinic for a 2nd opinion.
My neuro at Mayo diagnosed CIDP, started Plasma exchanges and sent me back to Rush to continue the treatment plan.That consisted of prednisone and cellcept, both to suppress my immune system. It was only several days later that I began getting faint twitches in what remained of my arm and leg muscles - I had lost over 50 lb of muscle due to atrophy.
I went into Rush's rehab center and worked my butt off in OT and PT, getting three hours a day. The first time they got me vertical in a standing frame, I passed out. I made them put me in it the next day. I remember little victories like the first time I was able to get into a crawling position on all fours, or the first time I was able to slide out of my wheelchair onto the table using a sliding board.
I won't go into all the details of coming back from being totally paralyzed from the neck down to where I am now, but it was quite an experience in humility and faith. The first time I walked,even though I was in a weight bearing machine and had braces on my legs,my physical therapist cried. One of the doctors made a video of it on his cellphone and later sent it to me. Whenever I feel sorry for myself or impatient for quicker recovery, I can watch that video to remind mysef how far I have come.
The doctors said I would have to go into a skilled nursing facility for 6 months to a year after leaving Rush, but I told them,"no, I will walk into my house for Christmas". I was right. I was discharged Nov.13 and came home in a wheelchair. Within two weeks, I was using a walker, then a cane, finally walking unassisted.
I used up the outpatient Ot and PT that my insurance would pay for, and in mid February,began working out at the gym on my own. That's where I am now. I have been lifting free weights for strength, and highly recommend doing heavy squats and deadlifts with barbells because of the way those excercises require every muscle in the body. Just don't expect to impress anyone with the wimpy weight you lift ~ the important thing is to push yourself against your OWN abilities and steadily increase the weights as you gain strength. Track every detail of your workouts and above all, use moderation. My doctors have told me what I am doing is fine as long as I don't workout so heavily today that I can't do a little more tomorrow. Moderation and patience is the key.
I still have a lot of numbness,tingling, and weakness from the knees down. I recently went back up to Mayo for a 6 month reunion with the neuro there and he did another EMG. Next week I see my neuro at Rush, so I'll get his interpretation of the test. I don't know if another round of plasma exchanges will help speed things up, or if I simply need to be patient and wait for those nerve axons to repair. Due to the bad side effects associated with taking prednisone for ong periods of time, he may taper it down some more from the 30 mg/day I'm taking now. After reading other of other people's experiences here, I am trying to watch for any signs of regression. I think my progress has been moving forward,except for the knees down-I'll see what my Doc says next week.
Best of luck with your experience. Don't give up, and try to keep working!
Jeff
Hi Knott, I can't tell you how long I've had CIDP because I don't know. I know that I was diagnosed with it in February after my EMG testing. It wasn't until then that I knew what to look up and find that the symptoms of CIDP are the same as the vague symptoms I've had for quite some time. I had never heard of it before February. In my searching for information, I learned that it was closely related to the acute form of GBS... and that ( GBS ) was strongly related to the H1N1 Flu virus vaccinations that everyone, specially in the healthcare field had to have. I've always gotten the flu shot each year because of the nature of my work. Now In hindsight, some of my symptoms could have actually rooted back then. I didn't know. I'm not a spring chicken any more and just chalked it up to my aging some of the things that I had been experiencing. But they were not strong enough or specific enough to really complain about to a doctor. " I'm just not feeling like myself these days? " "I'm clumsy and I fall sometimes?" I began to find myself more "off balance" last year, more so as the year wore on. It wasn't until my right leg went totally numb on me back in December that I was strongly alerted to seek help. Something was dramatically wrong then! And they began to look. I had had work incidents where I was off work for weeks due to tendonitis and had had an EMG then and they found what they called "distal neuropathy." Okay... so what is that?
It didn't keep me from going back to work and I did. But now understanding what I am dealing with, can see where this probably started even before that. And that was 2 years ago. No treatment... just went back to work. Since I had a fall this last November, I blamed much of my symptoms on that fall and the bulging disk the MRI found. The doctors said not all of my symptoms were related to that and they continued to dig for answers with more testing. The EMG Neuro ultimately found the diagnosis for CIDP. Since then, I've had extensive blood work done, and a spinal tap. To date the only medication I am on is Norco for my back pain... ( Low back where the bulging disk is and further up between my shoulder blades spasm often... ) And I get Flexoril for that. I've been off work since the beginning of December and have lost my BCBS insurance this month, and was just told a bit ago that I have been terminated from my job for exhausting my FMLA leave. I have been unable to go back to work because my balance is off and I fall. My feet and legs are still numb. I can still walk somewhat okay in the house. I'm stiff and slow sometimes, but with out shoes I can feel the floor. Outside, I use a cane to keep me on my feet and so far that's working okay. My financial situation is in the dumper though. Minimal benefits from AFLAC is all I'm getting, but I have applied for Soc Sec Dis and DHS Dis benefits and have applied for adult Medicaid.
I was called my the EMG neuro and told that they wanted to start me on the IVIG but since my insurance has been cancelled, they will hold off and see if I can get that because the IVIG is so outlandishly expensive. $1000.00/gram... I don't have the money or the coverage as yet so I'm in a hurry up and wait situation now, struggling to keep my home. As bad as that's been, my emotions have been in the ringer and the doctor put me on Xanax for my anxiety and that's helping me keep a cooler head and able to talk with folks I need to with out crying and sobbing so I couldn't complete a sentence. But as yet that's all I've been on. No therapy, nothing. And at this point, very much in limbo until I hear whether I can qualify for assistance. I just turned 54 last month. I try to come here daily looking for information and inspiration to keep my head on straight and find answers and help. I have learned that this is very different for everyone. And I should be thankful that I can still walk... but there are times too, when I wonder if I should prepare myself for not being able to walk?
I've decided not to own my disease... CIDP is something I have... it's not me. I get up daily and do my chores in my own time and in my own pace, but I keep doing them. And I'm starting a low impact exercise routine to maintain muscle tone and strength. I don't know if it will work? But I need to feel empowered somehow... Like I'm still in control of my life. I've never been a quitter, and the first three or four months since this all began I was in a very low, very dark place in my life and I refuse to stay there. It's not a happy place.
I live in my own home, I take care of myself and I do what I can do in spurts. When my back hurts I stop.. When I get tired I stop... rest a bit and get up and go again. Sometimes I can rest 10-15 minutes and go again for another hour... other times I can't get up and move much for an hour or so, but then I do get up and try. It depends on the tasks at hand. My hands shake sometimes too, so forms that need to be filled out take some time and several tries to complete. I too don't want to become a burden to anyone so will continue to force myself to hang on to what abilities I still have.
Keep your spirits up and find positives... Never let go of anything positive. It's your daily vitamin. :)
Jeff... yours is a story of pure inspiration! Thank you for sharing! Please keep us posted... Sis
Jeff said:
Hi Knott,
I am 56.I have what turned out to be an unusually fast progreesing CIDP. 1st symptoms were in March,2012.I tried to get a diagnosis working with my Doc and trying to get appointments with new doctors. I am new to this site, but have noticed a common theme among many,if not most of us, that is how difficult and confusing it can be just trying to find out what's wrong. Making appointments with new doctors can take weeks, tests like MRIs, CT scans, PET scans, x-rays,etc all have to be scheduled.Meanwhile, I kept getting weaker and weaker and to be honest,more than a little worried.
By the end of June, I realized I was losing the race to what ever it was, so I took medical leave from work and got my Doc to get me admitted to Rush University Med. Ctr. in Chicago.Within a week, I could no longer walk, and by the end of July, The only thing I could lift off the bed against gravity was my head. By mid August, I had received 4 different tentative diagnoses,3 of which were fatal. Part of what confused them was my total lack of response to IVIG.So, with my Rush neurologist's help, I got sent to Mayo Clinic for a 2nd opinion.
My neuro at Mayo diagnosed CIDP, started Plasma exchanges and sent me back to Rush to continue the treatment plan.That consisted of prednisone and cellcept, both to suppress my immune system. It was only several days later that I began getting faint twitches in what remained of my arm and leg muscles - I had lost over 50 lb of muscle due to atrophy.
I went into Rush's rehab center and worked my butt off in OT and PT, getting three hours a day. The first time they got me vertical in a standing frame, I passed out. I made them put me in it the next day. I remember little victories like the first time I was able to get into a crawling position on all fours, or the first time I was able to slide out of my wheelchair onto the table using a sliding board.
I won't go into all the details of coming back from being totally paralyzed from the neck down to where I am now, but it was quite an experience in humility and faith. The first time I walked,even though I was in a weight bearing machine and had braces on my legs,my physical therapist cried. One of the doctors made a video of it on his cellphone and later sent it to me. Whenever I feel sorry for myself or impatient for quicker recovery, I can watch that video to remind mysef how far I have come.
The doctors said I would have to go into a skilled nursing facility for 6 months to a year after leaving Rush, but I told them,"no, I will walk into my house for Christmas". I was right. I was discharged Nov.13 and came home in a wheelchair. Within two weeks, I was using a walker, then a cane, finally walking unassisted.
I used up the outpatient Ot and PT that my insurance would pay for, and in mid February,began working out at the gym on my own. That's where I am now. I have been lifting free weights for strength, and highly recommend doing heavy squats and deadlifts with barbells because of the way those excercises require every muscle in the body. Just don't expect to impress anyone with the wimpy weight you lift ~ the important thing is to push yourself against your OWN abilities and steadily increase the weights as you gain strength. Track every detail of your workouts and above all, use moderation. My doctors have told me what I am doing is fine as long as I don't workout so heavily today that I can't do a little more tomorrow. Moderation and patience is the key.
I still have a lot of numbness,tingling, and weakness from the knees down. I recently went back up to Mayo for a 6 month reunion with the neuro there and he did another EMG. Next week I see my neuro at Rush, so I'll get his interpretation of the test. I don't know if another round of plasma exchanges will help speed things up, or if I simply need to be patient and wait for those nerve axons to repair. Due to the bad side effects associated with taking prednisone for ong periods of time, he may taper it down some more from the 30 mg/day I'm taking now. After reading other of other people's experiences here, I am trying to watch for any signs of regression. I think my progress has been moving forward,except for the knees down-I'll see what my Doc says next week.
Best of luck with your experience. Don't give up, and try to keep working!
Jeff
Thank you,Sis. Both for your kind comments and sharing your story. In a way, I am fortunate in that mine came on so fast, I was able to get into the hospital while I still had insurance. Like you, I have run way past my extended medical leave at work and am no longer employed there.
The insurance thing is a nightmare, and I'll pray that you get the SSDI and Medicare.
Pretty much summed up on my Ben's Friends Page. Click on my user name to view it. I hope that you are able to keep your current level of function, or even greater!
I am a 66 y.o. retiree. Retired in 2006, Dx was January 2011, progressively getting worse. I've been on Prednisone, IVIg, Immuran, Plasmapheresis and CellCept. I started out with a cane, graduated to a walker, then to a walker with wheels and I am now in a wheelchair, 24/7. 40mg of Prednisone per day was giving me "muscle myopathy", so they had to cut down on it, as it was as bad for my muscles, as the CIDP was for the nerves. Had to stop the IVIg because it was making my Pulmonary Fibrosis worse only have 60% of normal breathing capacity. I also had to stop the Immuran. I guess I was allergic to it. It put me in ICU for 2 days, regular floor for 2 days, then 5 weeks in a nursing home rehab unit.
On O2 for the PF, 24/7, 3ml. Been through all sorts of physical therapy, nothing helped. My last 2 therapists told me that there was NOTHING they could do for me, any help would have to come from medicine.
I've begun having Incredibly strong pain in legs, hands, feet and toes. The pains were initially like bee stings or needle pricks, but they progressed too. Doc's gave me Gabapentin for the pain. It started to space out the attacks, but not the intensity of the pain. And, now it doesn't do anything.
I can shower & dress myself, although my wife watches me in the shower, I fell in there once, one of my many falls. I have a "sock aid" that I need to put on my sox, a visiting nurse to cut my toe nails. I barely can do my fingernails, between the hand tremors and the weakened muscles in my hands and fingers. I also need one of these for the toilet:
I'd advise you to check out some of the personal stories of the other members. No two people react the same to CIDP, nor do the medications all give the same relief. Your story will be as varied as the rest of ours are, as you have seen with Sis, Jeff & Mayberry. Some people live a very long time with this disease, some don't. If you are still working after having been diagnosed 3.5 years ago, I'd say you are doing pretty well!
Best of Luck to you, and God bless us all!
Henry
Thank you SO much for sharing - inspiring and also helpful against my own journey.
Jeff said:
Hi Knott,
I am 56.I have what turned out to be an unusually fast progreesing CIDP. 1st symptoms were in March,2012.I tried to get a diagnosis working with my Doc and trying to get appointments with new doctors. I am new to this site, but have noticed a common theme among many,if not most of us, that is how difficult and confusing it can be just trying to find out what's wrong. Making appointments with new doctors can take weeks, tests like MRIs, CT scans, PET scans, x-rays,etc all have to be scheduled.Meanwhile, I kept getting weaker and weaker and to be honest,more than a little worried.
By the end of June, I realized I was losing the race to what ever it was, so I took medical leave from work and got my Doc to get me admitted to Rush University Med. Ctr. in Chicago.Within a week, I could no longer walk, and by the end of July, The only thing I could lift off the bed against gravity was my head. By mid August, I had received 4 different tentative diagnoses,3 of which were fatal. Part of what confused them was my total lack of response to IVIG.So, with my Rush neurologist's help, I got sent to Mayo Clinic for a 2nd opinion.
My neuro at Mayo diagnosed CIDP, started Plasma exchanges and sent me back to Rush to continue the treatment plan.That consisted of prednisone and cellcept, both to suppress my immune system. It was only several days later that I began getting faint twitches in what remained of my arm and leg muscles - I had lost over 50 lb of muscle due to atrophy.
I went into Rush's rehab center and worked my butt off in OT and PT, getting three hours a day. The first time they got me vertical in a standing frame, I passed out. I made them put me in it the next day. I remember little victories like the first time I was able to get into a crawling position on all fours, or the first time I was able to slide out of my wheelchair onto the table using a sliding board.
I won't go into all the details of coming back from being totally paralyzed from the neck down to where I am now, but it was quite an experience in humility and faith. The first time I walked,even though I was in a weight bearing machine and had braces on my legs,my physical therapist cried. One of the doctors made a video of it on his cellphone and later sent it to me. Whenever I feel sorry for myself or impatient for quicker recovery, I can watch that video to remind mysef how far I have come.
The doctors said I would have to go into a skilled nursing facility for 6 months to a year after leaving Rush, but I told them,"no, I will walk into my house for Christmas". I was right. I was discharged Nov.13 and came home in a wheelchair. Within two weeks, I was using a walker, then a cane, finally walking unassisted.
I used up the outpatient Ot and PT that my insurance would pay for, and in mid February,began working out at the gym on my own. That's where I am now. I have been lifting free weights for strength, and highly recommend doing heavy squats and deadlifts with barbells because of the way those excercises require every muscle in the body. Just don't expect to impress anyone with the wimpy weight you lift ~ the important thing is to push yourself against your OWN abilities and steadily increase the weights as you gain strength. Track every detail of your workouts and above all, use moderation. My doctors have told me what I am doing is fine as long as I don't workout so heavily today that I can't do a little more tomorrow. Moderation and patience is the key.
I still have a lot of numbness,tingling, and weakness from the knees down. I recently went back up to Mayo for a 6 month reunion with the neuro there and he did another EMG. Next week I see my neuro at Rush, so I'll get his interpretation of the test. I don't know if another round of plasma exchanges will help speed things up, or if I simply need to be patient and wait for those nerve axons to repair. Due to the bad side effects associated with taking prednisone for ong periods of time, he may taper it down some more from the 30 mg/day I'm taking now. After reading other of other people's experiences here, I am trying to watch for any signs of regression. I think my progress has been moving forward,except for the knees down-I'll see what my Doc says next week.
Best of luck with your experience. Don't give up, and try to keep working!
Jeff
Inspiring and tough Sis - thank you for your sharing - helps me understand and accept more of me. And I do sit with the thought - what is the longer term for us ... will it be a wheelchair one day - its ok if it is - some part of me 'just wants to know' - but for now like you - i did deep and do my best - one day at a time. Hope today is a good one for you, again thks.
Sis said:
Hi Knott, I can't tell you how long I've had CIDP because I don't know. I know that I was diagnosed with it in February after my EMG testing. It wasn't until then that I knew what to look up and find that the symptoms of CIDP are the same as the vague symptoms I've had for quite some time. I had never heard of it before February. In my searching for information, I learned that it was closely related to the acute form of GBS... and that ( GBS ) was strongly related to the H1N1 Flu virus vaccinations that everyone, specially in the healthcare field had to have. I've always gotten the flu shot each year because of the nature of my work. Now In hindsight, some of my symptoms could have actually rooted back then. I didn't know. I'm not a spring chicken any more and just chalked it up to my aging some of the things that I had been experiencing. But they were not strong enough or specific enough to really complain about to a doctor. " I'm just not feeling like myself these days? " "I'm clumsy and I fall sometimes?" I began to find myself more "off balance" last year, more so as the year wore on. It wasn't until my right leg went totally numb on me back in December that I was strongly alerted to seek help. Something was dramatically wrong then! And they began to look. I had had work incidents where I was off work for weeks due to tendonitis and had had an EMG then and they found what they called "distal neuropathy." Okay... so what is that?
It didn't keep me from going back to work and I did. But now understanding what I am dealing with, can see where this probably started even before that. And that was 2 years ago. No treatment... just went back to work. Since I had a fall this last November, I blamed much of my symptoms on that fall and the bulging disk the MRI found. The doctors said not all of my symptoms were related to that and they continued to dig for answers with more testing. The EMG Neuro ultimately found the diagnosis for CIDP. Since then, I've had extensive blood work done, and a spinal tap. To date the only medication I am on is Norco for my back pain... ( Low back where the bulging disk is and further up between my shoulder blades spasm often... ) And I get Flexoril for that. I've been off work since the beginning of December and have lost my BCBS insurance this month, and was just told a bit ago that I have been terminated from my job for exhausting my FMLA leave. I have been unable to go back to work because my balance is off and I fall. My feet and legs are still numb. I can still walk somewhat okay in the house. I'm stiff and slow sometimes, but with out shoes I can feel the floor. Outside, I use a cane to keep me on my feet and so far that's working okay. My financial situation is in the dumper though. Minimal benefits from AFLAC is all I'm getting, but I have applied for Soc Sec Dis and DHS Dis benefits and have applied for adult Medicaid.
I was called my the EMG neuro and told that they wanted to start me on the IVIG but since my insurance has been cancelled, they will hold off and see if I can get that because the IVIG is so outlandishly expensive. $1000.00/gram... I don't have the money or the coverage as yet so I'm in a hurry up and wait situation now, struggling to keep my home. As bad as that's been, my emotions have been in the ringer and the doctor put me on Xanax for my anxiety and that's helping me keep a cooler head and able to talk with folks I need to with out crying and sobbing so I couldn't complete a sentence. But as yet that's all I've been on. No therapy, nothing. And at this point, very much in limbo until I hear whether I can qualify for assistance. I just turned 54 last month. I try to come here daily looking for information and inspiration to keep my head on straight and find answers and help. I have learned that this is very different for everyone. And I should be thankful that I can still walk... but there are times too, when I wonder if I should prepare myself for not being able to walk?
I've decided not to own my disease... CIDP is something I have... it's not me. I get up daily and do my chores in my own time and in my own pace, but I keep doing them. And I'm starting a low impact exercise routine to maintain muscle tone and strength. I don't know if it will work? But I need to feel empowered somehow... Like I'm still in control of my life. I've never been a quitter, and the first three or four months since this all began I was in a very low, very dark place in my life and I refuse to stay there. It's not a happy place.
I live in my own home, I take care of myself and I do what I can do in spurts. When my back hurts I stop.. When I get tired I stop... rest a bit and get up and go again. Sometimes I can rest 10-15 minutes and go again for another hour... other times I can't get up and move much for an hour or so, but then I do get up and try. It depends on the tasks at hand. My hands shake sometimes too, so forms that need to be filled out take some time and several tries to complete. I too don't want to become a burden to anyone so will continue to force myself to hang on to what abilities I still have.
Keep your spirits up and find positives... Never let go of anything positive. It's your daily vitamin. :)
Thank you for sharing Henry - really appreciate
Henry said:
I am a 66 y.o. retiree. Retired in 2006, Dx was January 2011, progressively getting worse. I've been on Prednisone, IVIg, Immuran, Plasmapheresis and CellCept. I started out with a cane, graduated to a walker, then to a walker with wheels and I am now in a wheelchair, 24/7. 40mg of Prednisone per day was giving me "muscle myopathy", so they had to cut down on it, as it was as bad for my muscles, as the CIDP was for the nerves. Had to stop the IVIg because it was making my Pulmonary Fibrosis worse only have 60% of normal breathing capacity. I also had to stop the Immuran. I guess I was allergic to it. It put me in ICU for 2 days, regular floor for 2 days, then 5 weeks in a nursing home rehab unit.
On O2 for the PF, 24/7, 3ml. Been through all sorts of physical therapy, nothing helped. My last 2 therapists told me that there was NOTHING they could do for me, any help would have to come from medicine.
I've begun having Incredibly strong pain in legs, hands, feet and toes. The pains were initially like bee stings or needle pricks, but they progressed too. Doc's gave me Gabapentin for the pain. It started to space out the attacks, but not the intensity of the pain. And, now it doesn't do anything.
I can shower & dress myself, although my wife watches me in the shower, I fell in there once, one of my many falls. I have a "sock aid" that I need to put on my sox, a visiting nurse to cut my toe nails. I barely can do my fingernails, between the hand tremors and the weakened muscles in my hands and fingers. I also need one of these for the toilet:
I'd advise you to check out some of the personal stories of the other members. No two people react the same to CIDP, nor do the medications all give the same relief. Your story will be as varied as the rest of ours are, as you have seen with Sis, Jeff & Mayberry. Some people live a very long time with this disease, some don't. If you are still working after having been diagnosed 3.5 years ago, I'd say you are doing pretty well!
Best of Luck to you, and God bless us all!
Henry
Yes, Janie... this is tough. A year ago, if you had told me I would be where I am right now, I would have blown you off and told you that you were just flippin nuts! I have always been very independent and worked hard for everything I've ever gotten in my life. There were no freebies for this girl, and now, I'm not looking for them either. But I've found myself in a position where I have to ask for help and look for answers. Suck it up and move ahead. I have good days and not so good days, but each day I can get up... and use my own two feet to get me from here to there, to me, is a good day now, and I use it. If you every want to just yap... drop me a line. I like to think sometimes that my two cents worth in here could be someone's shot of adrenalin for someone who needs a kick in the britches... but more often then not... it's me that needs that proverbial kick, and I welcome it. I don't want to find myself wallowing in self pity or looking for someone's pity. At the same time... It is nice to be able to talk with those who really know what this is, and can relate to our condition. Feel free to drop me a line any time. ~ Sis
Janie said:
Inspiring and tough Sis - thank you for your sharing - helps me understand and accept more of me. And I do sit with the thought - what is the longer term for us ... will it be a wheelchair one day - its ok if it is - some part of me 'just wants to know' - but for now like you - i did deep and do my best - one day at a time. Hope today is a good one for you, again thks.
Sis said:Hi Knott, I can't tell you how long I've had CIDP because I don't know. I know that I was diagnosed with it in February after my EMG testing. It wasn't until then that I knew what to look up and find that the symptoms of CIDP are the same as the vague symptoms I've had for quite some time. I had never heard of it before February. In my searching for information, I learned that it was closely related to the acute form of GBS... and that ( GBS ) was strongly related to the H1N1 Flu virus vaccinations that everyone, specially in the healthcare field had to have. I've always gotten the flu shot each year because of the nature of my work. Now In hindsight, some of my symptoms could have actually rooted back then. I didn't know. I'm not a spring chicken any more and just chalked it up to my aging some of the things that I had been experiencing. But they were not strong enough or specific enough to really complain about to a doctor. " I'm just not feeling like myself these days? " "I'm clumsy and I fall sometimes?" I began to find myself more "off balance" last year, more so as the year wore on. It wasn't until my right leg went totally numb on me back in December that I was strongly alerted to seek help. Something was dramatically wrong then! And they began to look. I had had work incidents where I was off work for weeks due to tendonitis and had had an EMG then and they found what they called "distal neuropathy." Okay... so what is that?
It didn't keep me from going back to work and I did. But now understanding what I am dealing with, can see where this probably started even before that. And that was 2 years ago. No treatment... just went back to work. Since I had a fall this last November, I blamed much of my symptoms on that fall and the bulging disk the MRI found. The doctors said not all of my symptoms were related to that and they continued to dig for answers with more testing. The EMG Neuro ultimately found the diagnosis for CIDP. Since then, I've had extensive blood work done, and a spinal tap. To date the only medication I am on is Norco for my back pain... ( Low back where the bulging disk is and further up between my shoulder blades spasm often... ) And I get Flexoril for that. I've been off work since the beginning of December and have lost my BCBS insurance this month, and was just told a bit ago that I have been terminated from my job for exhausting my FMLA leave. I have been unable to go back to work because my balance is off and I fall. My feet and legs are still numb. I can still walk somewhat okay in the house. I'm stiff and slow sometimes, but with out shoes I can feel the floor. Outside, I use a cane to keep me on my feet and so far that's working okay. My financial situation is in the dumper though. Minimal benefits from AFLAC is all I'm getting, but I have applied for Soc Sec Dis and DHS Dis benefits and have applied for adult Medicaid.
I was called my the EMG neuro and told that they wanted to start me on the IVIG but since my insurance has been cancelled, they will hold off and see if I can get that because the IVIG is so outlandishly expensive. $1000.00/gram... I don't have the money or the coverage as yet so I'm in a hurry up and wait situation now, struggling to keep my home. As bad as that's been, my emotions have been in the ringer and the doctor put me on Xanax for my anxiety and that's helping me keep a cooler head and able to talk with folks I need to with out crying and sobbing so I couldn't complete a sentence. But as yet that's all I've been on. No therapy, nothing. And at this point, very much in limbo until I hear whether I can qualify for assistance. I just turned 54 last month. I try to come here daily looking for information and inspiration to keep my head on straight and find answers and help. I have learned that this is very different for everyone. And I should be thankful that I can still walk... but there are times too, when I wonder if I should prepare myself for not being able to walk?
I've decided not to own my disease... CIDP is something I have... it's not me. I get up daily and do my chores in my own time and in my own pace, but I keep doing them. And I'm starting a low impact exercise routine to maintain muscle tone and strength. I don't know if it will work? But I need to feel empowered somehow... Like I'm still in control of my life. I've never been a quitter, and the first three or four months since this all began I was in a very low, very dark place in my life and I refuse to stay there. It's not a happy place.
I live in my own home, I take care of myself and I do what I can do in spurts. When my back hurts I stop.. When I get tired I stop... rest a bit and get up and go again. Sometimes I can rest 10-15 minutes and go again for another hour... other times I can't get up and move much for an hour or so, but then I do get up and try. It depends on the tasks at hand. My hands shake sometimes too, so forms that need to be filled out take some time and several tries to complete. I too don't want to become a burden to anyone so will continue to force myself to hang on to what abilities I still have.
Keep your spirits up and find positives... Never let go of anything positive. It's your daily vitamin. :)
I'm 31 years old and was diagnosed with CIDP 1 year ago. Currently I"m taking the IVIG every 2 weeks and I respond fairly well to it. I always have tingling in my feet and hands and cannot take on stairs with out a railing. My Neuro is concerned with how my kidneys will hold up being on the IVIG every 2 weeks but to this point no problems. Recently I seeked a 2nd opinion to my condition and have been referred to a Mayo trained doctor that specializes in conditions like CIDP.
I struggle with my condition as I'm only 31 years old and have 3 small girls to support. My wife was not working but since my diagnosis has gone back to nursing school b/c of the concern of how long I'll be able to work if my condition worsens.
It's very apparent in reading each story that everyone responds differently to treatments but I'm hopeful that some day I will be able to do some of the things I used to enjoy.
Keep the hope,that is about all we all have got and family.
Billiam said:
I’m 31 years old and was diagnosed with CIDP 1 year ago. Currently I"m taking the IVIG every 2 weeks and I respond fairly well to it. I always have tingling in my feet and hands and cannot take on stairs with out a railing. My Neuro is concerned with how my kidneys will hold up being on the IVIG every 2 weeks but to this point no problems. Recently I seeked a 2nd opinion to my condition and have been referred to a Mayo trained doctor that specializes in conditions like CIDP.
I struggle with my condition as I’m only 31 years old and have 3 small girls to support. My wife was not working but since my diagnosis has gone back to nursing school b/c of the concern of how long I’ll be able to work if my condition worsens.
It’s very apparent in reading each story that everyone responds differently to treatments but I’m hopeful that some day I will be able to do some of the things I used to enjoy.
I've had CIDP now for eight years, it wasn't recognized at first when I had a drop foot in 2005, but after all the testing, I was finally given the diagnoses a year and a half ago. I'm 64 years old and recently retired due to medical reasons. Since I live in Ontario Canada, IVIG is cover by our standard provincial insurance, so I can't help you much with that except suggest that you get an advocate. Because of your age I believe you have an eighty percent chance of remission which could happen at anytime. Good Luck and God Bless, Gary
Thanks for the insight, Gary
springmang said:
I've had CIDP now for eight years, it wasn't recognized at first when I had a drop foot in 2005, but after all the testing, I was finally given the diagnoses a year and a half ago. I'm 64 years old and recently retired due to medical reasons. Since I live in Ontario Canada, IVIG is cover by our standard provincial insurance, so I can't help you much with that except suggest that you get an advocate. Because of your age I believe you have an eighty percent chance of remission which could happen at anytime. Good Luck and God Bless, Gary
Hi, Im 68 and was diagnosed with CIDP in October 2012.
Legs felt slightly heavy in Jan 2012.
Went on big trip in late April to May 2012 and was able to do a ton of walking. Harder walking up incline and stairs, getting on the buses was difficult.
Got back from the trip and I was getting worse. tried playing golf and walking a short course, was very hard. Stopped walking to my part-time job a few blocks away in June 2012.
July had mild pneumonia and developed sixth nerve palsy which lasted about six weeks.
Saw a neurologist, had EMG and and was diagnosed with diabetic amyotropthy.
Started more physical therapy.
Have a new endocrinologist who diagnosed me as a type 1 diabetic after being type 2 for many years, also was diagnosed with celiac disease 12 years ago.
Started falling day after Labor Day 2012 and was in a wheelchair for 6 months
The new neurologist had me go the Hospital. Was in for three days of extensive testing and then in a rehab hospital for 16 days. Still diagnosed with diabetic amyotropthy.
They thought I was making progress, but my upper body was still strong and I was using my upper body to walk using a walker plus I went from 145 pounds down to 127 pounds. due to muscle loss.
Got home and had Visiting Nurse service for PT and OT, was still getting weaker.
Saw the neurologist and he saw that I was getting weaker.
Recommended I see a certain specialist.
Saw me on a Thursday and could not believe how weak I was.
Had to wait for the next Wed for him to do his EMG.
Came back on Wed and did EMG and saw some positive CIDP.
Meanwhile hurricane Sandy tried to interrupt my treatments but I still got them in.
Started me the next day aggressively with IVIG and solumedrol and had it 2 times a week for 3 weeks, skipped a week and have once it once week with the solumedrol slowly being reduced from 1g every other week to 500 mg and now now 250 mg, with 40 mg the other weeks, then should be 40 mg before going off the solumedrol. I seem to not have any negative response to the treatments.
Started outpatient PT and OT at my local hospital which had these young unbelievable nuro-therapists, they were fantastic.
Results were slow and positive with real rapid progress after a few weeks, getting up from wheelchair felt easier and was soon able to open a bottle of water as my hands and arms had gotten weaker.
Used a walker for about a week then a cane for a couple weeks then nothing.
Feeling stronger and now progress is slower as I get closer to 100%.
Weight is up to 149 pounds.
I'd say I'm about 85-90% now.
The funny feeling has gone from my hands and my legs and feet look normal now with a small amount of that funny feeling like walking on wet sand.
People who saw me just a few months ago say "it's a miracle"!
I'm back at my part time job and it almost feels like I was never away for 7 months.
Went to driving range today and I think I'm ready for a round!
You just got to stay positive, I never gave up and worked real hard at therapy and still do PT on my own.
Finding the right doctor I feel is the key.
I thought having idiopathic epilepsy all my life was bad, but it seems to be nothing compared to the CIDP I've had for the past eight years.It only took my neuro 27 years to get the epilepsy fairly under control, so with the CIDP all I can pray for is a remission. I'm happy that all my kids are grown and on their own and this didn't hit me at a younger age. Billiam, I can only speak for myself and say; with epilepsy I worked until I was 62 yrs. old and I swore nothing would stop me, but having 5 mini-strokes and CIDP, told me it was time to take a break, you've got many good years ahead of you so don't let your CIDP get in the way. Gary
Hi I am 32 and was diagnosed with CIDP in October 2011
It has been over a year now since I was told and it all started with a twitch in my left leg. I am one of the lucky ones here I can still do everything I want and I don't have any real problems. My CIDP at this point is annoying at worst at best I don’t even remember I have it. Last month I had a flair up and it left me with some problems my feet and hands burn and I get cramps in my legs but it is still not really a problem.
I am don't have a lot of problems but none of the treatment I have been on work very fast some times I think the treatment is not helping at all and I am just having a good day.
The worst part of CIDP for me is the fear of what may happen.
You can't sit and worry about what may happen, because it may not get any worse and you'd be worrying for nothing. You have to take it day by day and be thankful for each day, I am. Gary