Extremely New to CIDP

Welcome New Member Check In
1

I am so new to this disease I haven't even started treatment. I have no idea what to expect or what to expect from treatment. I am already disabled from a spinal cord injury. I have bulging discs above and below where I had a herniated disc and during that surgery is when I got my spinal cord injury.

So I have been living with pain mostly manageable in my neck and between the shoulder blades. I'm not sure how long I have had this diseases. I'm not sure if it slowly comes on or if mine was a sudden onset. I just started having extreme pain in my lower back hips and thighs. Later on it started bothering my pelvic region and then came the lose of control of my bowels and mostly my bladder.

I tried to skip the spinal tap since I have read they are looking for a type of protein and you may or may not have it or it may or may not show up with this disease. I figured why go through another test but my neurologist told me they really needed to check me for any infections or other diseases that I could also have but he wasn't so concerned about that. After that I would start the ivig fusion treatments.

That's really all I know right now. I didn't ask anymore questions as I had looked the disease up after the doctor that gave me the nerve conduction test told me I had the disease. My next step was to wait because I wanted my neurologist that I really trusted to confirm this with me before I even told my family.

I'm very curious as how the ivig fusion treatments work and how often you go, where you go to have them. My neurologist wanted me to go visit my family over thanksgiving. He thought it would be good for me but it's going to be a very painful journey. Right now I'm on hydrocodone and fentenyl patches. Neither seem to touch the pain much.

I haven't figured out if I'm confused or just can't get words out but it seems to be happening a lot. I'm not sure if it's from the extreme pain or if this is just part of the disease. Trying to do much research goggling the disease has been frustrating to say the least.

I hope I am not taking the wrong attitude by not worrying so much about the disease but trying to be aware of it. My family seems to be very concerned. Mostly because I chose not to get all their answers and maybe I just didn't want to know everything at once, just the general, what does this mean, and how are you going to treat this?

There was no sit down discussion with my neurologist because I have his cell phone and I can text him if I need to, but he has a hospital position that is pretty important so I hate bothering him. We had our conversation and I told him just as I said on here that I would not worry about it but at least be aware of what I need to do. I've tended to worry a lot in the past and have learned not to worry about things I can't control. I also seem to ramble probably because I'm home alone all day every day, but I do have a roommate if I need anything he does help out.

I don't know if I'm like everyone new that comes to this site or if generally people know more than I do already. I hope people will give me insight and what to expect. I don't want to continue as I've asked a lot of questions already. I can tell you one thing that has helped just a little is a tens unit.

I have pain now from my feet to my arms and I really want to scream at times. It has seemed like a long road because I knew this wasn't the normal pain nor do I know how much I can recover. I already had walking issues with the cervical spinal cord injury. I guess I hope for getting rid of this awful pain and getting control of my bowels and bladder back.

Thanks to anyone that reply's!

2

Welcome. Cidp is so rare that a battery of tests have to be completed to rule out the more common reasons for neuropathy. Some are easily treated, others that may go away on their own. IVIG is extremely expensive and insurance doesn't like to pay without a spinal tap showing elevated proteins. Those of us who don't have elevated proteins have a more difficult time qualifying for ivig. Once a diagnosis has been established a loading dose (5 day) of ivig is given. It is given in the hospital, in or out patient or at home depending on doctors' orders and insurance benefits. Maintenance infusions of ivig are given after that depending on how you respond, your doctor and insurance benefits. Everyone responds differently. The range is almost complete recovery initially to several months to notice any change at all and everything in between. If ivig isn't effective there are many other treatment plans. It's smart to take this in baby steps as it is enough just coping with the illness. What is most important to know is that most of us get better and respond to one treatment or another. In the meantime, stay positive and keep everything moving. Take precautions as to not hurt yourself, like tripping or falling. It sounds like you have a good doctor which is half the battle. Be well.

3

Mabes is right in her assessment of IVIG, the tests, everything. She has been a Godsend to me. I was diagnosed in late Aug. after a year of hell. My neuro (his nurse Patti actually) sent to Public Aid in Springfield, IL and got permission for me to have one treatment a week for a year. I have had 6 treatments, #7 tomorrow. I am finally getting some results. I will have 2 "good" days, then go down hill. I didn't get the loading dose of 5 treatments in 5 days. That is probably why it is taking longer for me to have any results. But the damage caused in my year of hell hasn't improved. It's actually worse. I also have pain like no other I've ever felt. I am on 3600mg gabapentin and hydrocodone as needed. I have concentration issues, days I feel just plain stupid, confusion, memory loss. I've had problems with my bladder and bowels. It seems to be a day to day thing with me. But I am never too far from a bathroom. Just read all you can and be prepared. That's what I did, but I still had questions. I am also alone day in and day out. My sister takes me to appointments, but otherwise I am alone. I have just hired a lady to come a couple of day a week for 2 - 3 hours to help me clean. I also just had a port put in Friday. My veins couldn't handle the weekly IV's. Read the discussion where others have given their stories. It will help you a lot. Good luck my friend.

4

Thanks for the great info. Maybe I need to be a bit more worried than I thought. I think my neurologist more put it to me that I'd do this ivig fusion and be feeling better right away. I'm thinking he told me this so I wouldn't freak out and would go ahead and make my trip to visit my family. Everyone that replied gave me great information. Thanks so much!

mabes said:

Welcome. Cidp is so rare that a battery of tests have to be completed to rule out the more common reasons for neuropathy. Some are easily treated, others that may go away on their own. IVIG is extremely expensive and insurance doesn't like to pay without a spinal tap showing elevated proteins. Those of us who don't have elevated proteins have a more difficult time qualifying for ivig. Once a diagnosis has been established a loading dose (5 day) of ivig is given. It is given in the hospital, in or out patient or at home depending on doctors' orders and insurance benefits. Maintenance infusions of ivig are given after that depending on how you respond, your doctor and insurance benefits. Everyone responds differently. The range is almost complete recovery initially to several months to notice any change at all and everything in between. If ivig isn't effective there are many other treatment plans. It's smart to take this in baby steps as it is enough just coping with the illness. What is most important to know is that most of us get better and respond to one treatment or another. In the meantime, stay positive and keep everything moving. Take precautions as to not hurt yourself, like tripping or falling. It sounds like you have a good doctor which is half the battle. Be well.

5

Hello. This is a crazy disease. I am 30 now and was diagnosed just after my 28th birthday. The disease reacts differently in different people. Treatment can have a great/quick response for one and not another. It all just depends. Also, your Dr. will discuss with you some of the side effects that IVIG can cause (Nothing horrible, but not exactly pleasant either). I do hope and pray that you find some help/encouragement here. At times when no one else in your life understands, this group does. So even if you don't post a lot (like me) what others do post, is read. Feel free to ask anything! :)

6

I was diagnosed with GBS last June when I was 31. My feet and hands started to get a tingle feeling that gradually worsened over 3 weeks. I was issued 5 treatments of the IVIG and it worked great for about a month. I felt my normal strength and thought I was cured until the tingle feeling started to gradually come back again. My doctor then diagnosed me with CIDP and I'm currently doing IVIG treatment every 2 weeks. It keeps me going pretty good but if I spend a lot of time on my feet during the day I can feel the tingle feeling come back to my feet.

I feel fortunate with how well I respond to the IVIG treatments compared to others so all I can say is stay positive and and be thankful for everything

7

I would say to you…stay away from everyone until your neuro guy sits down with you and tells you what is happening to your body, and tells you to your face.
Best of luck.
PS
Try and stay as stress free and calm as you can…we are all different…with many different symptoms…and Nobody really knows what causes neuropathy…I only wish they did.

8

I would say to you…stay away from everyone until your neuro guy sits down with you and tells you what is happening to your body, and tells you to your face.
Best of luck.
PS
Try and stay as stress free and calm as you can…we are all different…with many different symptoms…and Nobody really knows what causes neuropathy…I only wish they did.

9

If your state permits you, medical marijuana does wonders for the pain. My pain was so se…vere I could hardly get out of bed for 4 years. I then tried some of my sons natural meds and within 2 days I could walk again. It truely helps.

10

Dear Newone,

Since the nerve test indicated damage, i would suggest that you get the spinal tap to confirm the presence of Protein in your SF. while this may be painful, depending on who does it, it seems that a presence of protein in the SF helps to rule in CIDP.

while you have to decide how to proceed with treatment, the biggest concern for me is that, what used to be my best friend, my very strong immune system, has now become my worst enemy. For me, without the IVIG, which has seemed to slow the nerve damage, i was losing serious amounts of muscle in my calves, which is why i first started to try to figure out what was going on. I was always big and strong and in shape. now balance, and having enough consistent energy to perform normal functions has become a challenge. You have to see if the IVIG will work for you. all of us have different approaches and responses as to what works. As IVIG seems to work for me, the challenge now is to find the balance between controlling the CDIP, while not having too many side effects from it. I started with 1 mg/kg for 12 sessions, every three weeks. Seemed to limit the progress of the demylination, but provided a lot of flu like symptoms and side effects.

while waiting for insurance to approve the second round of IVIG, i had none for almost 2 months and that wasn't good either. So i discussed with my Neurologist and we are now trying .6mg/kg(of body weight) it seems to be mostly ok. Still get days when lots of sleep is required. for the first three infusions of this seconfd round, i was trying .4mg/kg and that didn't seem to work either. Just have to see what works best for you as we are all different. As some have found this not to work, you may need to try other alternatives, but at least a place to start.(dosing every three weeks). i get the IVIG in the hospital because it was better accepted by my insurance company and always nice to be there just in case. no adverse reactions yet

since you are on Phentenyl patches, your pain is a lot worse than mine. i use 400 mg of Tramadol, 3000mg of acetaminophen, on a scheduled dosing, and have now started Lyrica for the nerve pain as well.

My neurologist has been my best ally. Please look to make sure that you get a good one

11

My neurologist told me he agree'd with the diagnosis of CIDP but told me I had to have the spinal tap to make sure I didn't have any other infections or diseases. I guess also to check for the protein. I know in some people they don't have the protein and then that can make things difficult in getting treatment. My neurologist's nurse put in for the approval of the spinal tap last Monday and so far I haven't heard of when I will have the spinal tap. I don't know what's holding up the process so I can't imagine when he asks for infusion treatments how long that will take to get approved.

I'm the one that didn't ask a whole lot about everything when my doctor told me what was going on. I wanted to kind of take it a step at a time and not have information over load. Then later I decided I wanted to know more and found this site. I'll talk to my neurologist more after I have the spinal tap. I did send him a message and just told him I'd be patient through the process.

Thanks so much Jon for sharing your story.!

Jon said:

Dear Newone,

Since the nerve test indicated damage, i would suggest that you get the spinal tap to confirm the presence of Protein in your SF. while this may be painful, depending on who does it, it seems that a presence of protein in the SF helps to rule in CIDP.

while you have to decide how to proceed with treatment, the biggest concern for me is that, what used to be my best friend, my very strong immune system, has now become my worst enemy. For me, without the IVIG, which has seemed to slow the nerve damage, i was losing serious amounts of muscle in my calves, which is why i first started to try to figure out what was going on. I was always big and strong and in shape. now balance, and having enough consistent energy to perform normal functions has become a challenge. You have to see if the IVIG will work for you. all of us have different approaches and responses as to what works. As IVIG seems to work for me, the challenge now is to find the balance between controlling the CDIP, while not having too many side effects from it. I started with 1 mg/kg for 12 sessions, every three weeks. Seemed to limit the progress of the demylination, but provided a lot of flu like symptoms and side effects.

while waiting for insurance to approve the second round of IVIG, i had none for almost 2 months and that wasn't good either. So i discussed with my Neurologist and we are now trying .6mg/kg(of body weight) it seems to be mostly ok. Still get days when lots of sleep is required. for the first three infusions of this seconfd round, i was trying .4mg/kg and that didn't seem to work either. Just have to see what works best for you as we are all different. As some have found this not to work, you may need to try other alternatives, but at least a place to start.(dosing every three weeks). i get the IVIG in the hospital because it was better accepted by my insurance company and always nice to be there just in case. no adverse reactions yet

since you are on Phentenyl patches, your pain is a lot worse than mine. i use 400 mg of Tramadol, 3000mg of acetaminophen, on a scheduled dosing, and have now started Lyrica for the nerve pain as well.

My neurologist has been my best ally. Please look to make sure that you get a good one

12

My primate doctor told me along time ago he would prescribe me medical marijuana but my insurance would never approve it. There very nasty about putting people in jail with murders for even having a little bit of marijuana in my state. I find it a bit appalling that pedophiles go to prison for a shorter time than someone that gets caught with a small amount of marijuana. They are changing the laws though. So i just stay away from it..

Mark said:

If your state permits you, medical marijuana does wonders for the pain. My pain was so se…vere I could hardly get out of bed for 4 years. I then tried some of my sons natural meds and within 2 days I could walk again. It truely helps.