@Happy, I feel the same!
I don't know how to define exactly what is a cure, but from what I have heard, stem cell therapy is pretty close to being that. Two problems, though: it is still not really mainstream, and if you have permanent damage, I don't think you will get it all back. But if you are having serious problems, and nothing else seems to work, that might be worth looking into.
Bill
Happy said:
I was 4 years into ill health before I changed my GP and within 10 days had a diagnosis in 2001. I have had all the tests including the radial biopsy, several times, every time I changed my neuro doctor,actually. Now I get on with what is left of me and make the most of every day.
I do I.V.I.G every 4th week...and don't feel a lot different..but what would I be like without it? Who knows?
Not my docs that's for sure!
My advice is stop searching,because right now there is nothing in the way of a CURE. Only a means of slowing the process down. Make the most of what you have in the way of mobility: take on board all means of aids and help to make life as good as possible, and mingle....do NOT hide away waiting for a cure.
By the way I am an optimist...no doom and gloom for me...just not prepared to be robbed of my life by this disease.
There is a 33% CURE rate for CIDP. It would be foolish for me to stop searching for a cure. I put off full disability (paraplegia, respiratory failings) by subjecting myself to strenuous exercise daily for the past ten years thinking my neuro problems were diabetic neuropathy (multiplied by 100 x). Everytime I get IvIG infusions I experience a tremendous return of strength and mobility, almost to the point before I was afflicted. I am not running yet, but I can do a solid 3 miles with ten pound weights. And, even at low points where I can hardly move, I get out and use my Nordic track bike, or Weider weight machine or stationary exercises... the point being is that by doing these strenuous exercises I somehow seem to be able to heal myself until the next morning. I have read that other people have done the same thing.
I also swim every other day for a solid 90 minutes. Afterwards I am a wreck, but symptoms of CIDP are less restrictive and in the process I keep building up muscle. However, I realize the problem is at the nerve root, and yet I feel as if I am defeating the problems at the root.
And, does anyone else use the 'push yourself to the limits', method I use?
Happy said:
I was 4 years into ill health before I changed my GP and within 10 days had a diagnosis in 2001. I have had all the tests including the radial biopsy, several times, every time I changed my neuro doctor,actually. Now I get on with what is left of me and make the most of every day.
I do I.V.I.G every 4th week...and don't feel a lot different..but what would I be like without it? Who knows?
Not my docs that's for sure!
My advice is stop searching,because right now there is nothing in the way of a CURE. Only a means of slowing the process down. Make the most of what you have in the way of mobility: take on board all means of aids and help to make life as good as possible, and mingle....do NOT hide away waiting for a cure.
By the way I am an optimist...no doom and gloom for me...just not prepared to be robbed of my life by this disease.
Glad you agree Estaban…I train hard twice a week and walk and do as much as I can…even when it wrecks me…at least I achieve something, and that makes me feel good!
To work out how often you should be getting your IVIg you should look up the product detail. If they are complete there should be a value stated for the "half-life". Mine has a half-life of about 30 days and I get my top-up every 28 days.
Will IVIg "cure"? That depends on the damage done. If the nerve damage has gone to the axon then a "cure" is unlikely. If the damage is just the meylin around the axon then my understanding is that the IVIg can prevent further damage and even repair some of the damage (so you get "better"). This does not mean you are "cured" because whatever caused the problem might still be active - you are maintained. A cure is only if the underlying problem is gone and damage can be repaired. Perhaps the other alternative is that the underlying problem is gone, damage done and nothing will fix it. You often hear of people where "nothing works" for a fix. Repair (a fix) only works if there is something left to repair.
Steroids are (apparently) somewhat better at "repair" but are not recommended for maintenance due to the possible adverse events (short and long term problems worse than the initial problem) - only recommended if IVIg fails.
And yet, I've read about many with CIDP get infusions at 7, 14, 30 day intervals. From what I've read, the attack on self (autoimmunity) is a function of the disease, not the effectiveness or half-life of the medication. How else can I explain crashing back to afflicted state at 12 days afterl ast infusion or 8 days after first on a bi-monthly regimen? I am hoping for an answer from someone at an infusion every 7 days (by the week) to determine amount given and side-effects, if any. THanks Mike
Michael C Stark said:
To work out how often you should be getting your IVIg you should look up the product detail. If they are complete there should be a value stated for the "half-life". Mine has a half-life of about 30 days and I get my top-up every 28 days.
Will IVIg "cure"? That depends on the damage done. If the nerve damage has gone to the axon then a "cure" is unlikely. If the damage is just the meylin around the axon then my understanding is that the IVIg can prevent further damage and even repair some of the damage (so you get "better"). This does not mean you are "cured" because whatever caused the problem might still be active - you are maintained. A cure is only if the underlying problem is gone and damage can be repaired. Perhaps the other alternative is that the underlying problem is gone, damage done and nothing will fix it. You often hear of people where "nothing works" for a fix. Repair (a fix) only works if there is something left to repair.
Steroids are (apparently) somewhat better at "repair" but are not recommended for maintenance due to the possible adverse events (short and long term problems worse than the initial problem) - only recommended if IVIg fails.
Estaban,
The way it works is like this: you need enough IG to counteract the effects of the "bad" antibodies in your blood stream. So, you get an initial dose. After 30 days, half of that is gone. (That is the meaning of half life.) After another 30 days, half of what is left is gone, so now three quarters of the original is gone. After another 30 days, seven-eights of the original is gone, and so on.
Now, lets suppose the original dose is twice the amount actually needed. In thirty days it is down to half of the original concentration, and now it is no longer quite enough, so you begin to lose strength, and need another treatment.
But if your original dose is not twice the needed amount, then by 30 days, when half of it is gone, you are well below the needed amount. In this case you would need a treatment sooner than 30 days, to avoid getting too weak between treatments.
So what they try to do is to give you a dose that is high enough to keep you in good shape for a reasonable period, before you need to come in again. But there is a limit to how much they can give and everyone seems to respond differently. So a dose that keeps someone else in good shape for 30 days may not be enough to do the same for you. It is a balancing act, and although there are guidelines, to some degree they can only arrive at the right dose by trial and error.
Because the IVIG is so expensive, there is a reluctance to over-dose. So, there seems to be a problem with doctors under-treating in some cases. In my case my doctor was very aggressive, and gave me high doses, but even so initially they only lasted for three weeks before I needed another treatment.
Hope this helps.Bill
Yes! I work out at a gym three days a week. I do aerobic and weight exercises. I work to the point that I have what I refer to as "Jello legs" by the time I am done. After I get home, I can't do anything but sit for an hour or so.
But then, after I recover a bit, I actually feel better. My legs feel much more natural, and even stronger. I sort of have the feeling that my nerves have re-learned a pathway, or something.
But, by the next morning, the effect has worn off. In fact, mornings are my worst time. It seems like it takes a couple of hours to get moving. After I move around a little bit, things are better, and then I can think about going out of the house. I don't feel like exercising until after lunch, although I can force myself to go by 10:00am or so if I really need to.
I have mentioned this exercise effect to my neurologist. He has been very good, but he has no explanation for this.
Bill
estaban said:
There is a 33% CURE rate for CIDP. It would be foolish for me to stop searching for a cure. I put off full disability (paraplegia, respiratory failings) by subjecting myself to strenuous exercise daily for the past ten years thinking my neuro problems were diabetic neuropathy (multiplied by 100 x). Everytime I get IvIG infusions I experience a tremendous return of strength and mobility, almost to the point before I was afflicted. I am not running yet, but I can do a solid 3 miles with ten pound weights. And, even at low points where I can hardly move, I get out and use my Nordic track bike, or Weider weight machine or stationary exercises... the point being is that by doing these strenuous exercises I somehow seem to be able to heal myself until the next morning. I have read that other people have done the same thing.
I also swim every other day for a solid 90 minutes. Afterwards I am a wreck, but symptoms of CIDP are less restrictive and in the process I keep building up muscle. However, I realize the problem is at the nerve root, and yet I feel as if I am defeating the problems at the root.
And, does anyone else use the 'push yourself to the limits', method I use?
Happy said:I was 4 years into ill health before I changed my GP and within 10 days had a diagnosis in 2001. I have had all the tests including the radial biopsy, several times, every time I changed my neuro doctor,actually. Now I get on with what is left of me and make the most of every day.
I do I.V.I.G every 4th week...and don't feel a lot different..but what would I be like without it? Who knows?
Not my docs that's for sure!
My advice is stop searching,because right now there is nothing in the way of a CURE. Only a means of slowing the process down. Make the most of what you have in the way of mobility: take on board all means of aids and help to make life as good as possible, and mingle....do NOT hide away waiting for a cure.
By the way I am an optimist...no doom and gloom for me...just not prepared to be robbed of my life by this disease.
Aloha Bill,
we seem to be in the same boat, manning the oars and rowing towards a solution. Stem cell therapy? I told Mr. Kaiser I'm game for anything if Kaiser foots the bill. Any thoughts on this?
Yeah, three or four days a week, any more, or misdirected exercise, seems to tear me down. I notice that when I am at the top of infusions, feeling the effects of the IgG, I have a much faster muscle recovery time. At the down level of nerve root dysfunction, the muscles cramp, are stiff and HURT! I use a HOMEMEDICS massage/heat unit massager on my spinal column, and if I use it correctly (deep and directed at nerve root locations) it really helps.
Thanks!
Uncle Bill said:
Yes! I work out at a gym three days a week. I do aerobic and weight exercises. I work to the point that I have what I refer to as "Jello legs" by the time I am done. After I get home, I can't do anything but sit for an hour or so.
But then, after I recover a bit, I actually feel better. My legs feel much more natural, and even stronger. I sort of have the feeling that my nerves have re-learned a pathway, or something.
But, by the next morning, the effect has worn off. In fact, mornings are my worst time. It seems like it takes a couple of hours to get moving. After I move around a little bit, things are better, and then I can think about going out of the house. I don't feel like exercising until after lunch, although I can force myself to go by 10:00am or so if I really need to.
I have mentioned this exercise effect to my neurologist. He has been very good, but he has no explanation for this.
Bill
estaban said:There is a 33% CURE rate for CIDP. It would be foolish for me to stop searching for a cure. I put off full disability (paraplegia, respiratory failings) by subjecting myself to strenuous exercise daily for the past ten years thinking my neuro problems were diabetic neuropathy (multiplied by 100 x). Everytime I get IvIG infusions I experience a tremendous return of strength and mobility, almost to the point before I was afflicted. I am not running yet, but I can do a solid 3 miles with ten pound weights. And, even at low points where I can hardly move, I get out and use my Nordic track bike, or Weider weight machine or stationary exercises... the point being is that by doing these strenuous exercises I somehow seem to be able to heal myself until the next morning. I have read that other people have done the same thing.
I also swim every other day for a solid 90 minutes. Afterwards I am a wreck, but symptoms of CIDP are less restrictive and in the process I keep building up muscle. However, I realize the problem is at the nerve root, and yet I feel as if I am defeating the problems at the root.
And, does anyone else use the 'push yourself to the limits', method I use?
Happy said:I was 4 years into ill health before I changed my GP and within 10 days had a diagnosis in 2001. I have had all the tests including the radial biopsy, several times, every time I changed my neuro doctor,actually. Now I get on with what is left of me and make the most of every day.
I do I.V.I.G every 4th week...and don't feel a lot different..but what would I be like without it? Who knows?
Not my docs that's for sure!
My advice is stop searching,because right now there is nothing in the way of a CURE. Only a means of slowing the process down. Make the most of what you have in the way of mobility: take on board all means of aids and help to make life as good as possible, and mingle....do NOT hide away waiting for a cure.
By the way I am an optimist...no doom and gloom for me...just not prepared to be robbed of my life by this disease.
All cases are not the same. For instance, I don’t feel stronger after IVIG. I can’t run or play golf. I went through physical therapy and started feeling stronger…then felt like I lost all I had gained.
I’m running as fast as I can to keep from back sliding further. But I remain positive, because the alternative makes me sick.
I don't get why anyone is talking "cure". I would say the word would be remission, but it doesn't sound like anyone is even in remission if you are continuing the IVIG treatments but trying to get your does right so you don't lose your strength in-between treatments. Although maybe a "cure" is there somewhere in stem cell research. For me since it's not FDA approved, I could get it done by a doctor near by, but he wants to charge and arm and a leg and I can't afford to do it. His treatment though is more for ruptured discs and spinal problems though to try to get your own body to repair the problems instead of surgery. He also does plasma treatments. i should call and ask if he want's to be a pioneer and let me be his trial patient to see if he could help with CIDP.
One thing from what you all have been talking about that really resonates that the doctor talked about in the seminar was to:
1. Don't over medicate
2. Don't under medicate
3. Know when to switch treatments
Now all this may be good and said, but it some what sound like it could also be an insurance problem in getting the right amount of IVIG so you not under medicated. Or could your neurologist not be fighting hard enough with your insurance to get the right amount to treat you? And last maybe he doesn't know the right amount?
All I can do for now is push myself daily to get up, at least shower, brush my teeth and try to do a few small things. I hear so much about pain, so I am hopeful that when I get to where all you all are and can talk about if my treatment is enough or how well it is doing, that this incredible pain will also be going away.
I see posts on Pain and Treatment but never both so I never know if the treatment helps the pain?
I guess this discussion is coming to an end and I have learned much about how different treatments are working and not working for some. How some of you are crashing and others are feeling good. And then as I said about about over and under medicating but maybe it's just the disease and certain treatments work really well in controlling it than others. I have no idea except to continue to study it.
I have become very discouraged on our current medical system and trying to get treatment. It has made me wonder if it makes a difference if its because I'm already on disability or not. Or if its just because I haven't found the "right" neurologist and the one I have had that was so good for so many years has just finally slipped enough that it's time that I really need to find a new one which just isn't easy when you don't live in a big city. I feel like I"m living in a 3rd world country sometimes. There has to be easier solutions in finding a good neurologist. Or maybe I will have to go the route one to treat my spinal cord injury and one to treat this condition. There are not many doctors that I can find though that have the expertise in the area of CIDP so I guess the best thing to do is not to give up.
Definitely don't give up, NEWONE. I did a search on our Louisiana members, and perhaps if you friend them and message them about doctor recommendations, they can help you find the right doctor:
http://www.livingwithcidp.org/profiles/members/search?name=&cou...
thank you dancer mom for the support. When I have looked up people from Louisiana they don't look active on here. Maybe I am searching wrong? I have been in contact though with the executive patient coordinator and explained my symptoms and how urgent it's becoming that I get in to see my neurologist or a neurologist that is in this field. It really wasn't until I told the symptoms that she found it urgent but I am making progress and she is trying.
I guess you just have to keep greasing the wheel even if you don't feel like it so to say. This waking up with pain all over my body and not being able to move is quite scary so I don't want it to keep happening.
The Louisiana folks may not have been here for awhile, but if you friend them and add a message to your request, they may revisit the group to help you out. Give it a try, and we'll see.
Thanks for the link. Very informative,useful.
Michael C Stark said:
This reference is just a little old but if you have not already found it you might find it informative. Peripheral Neuropathy: Differential Diagnosis and Management HEND A...
Don't rely too much on the idea of three criteria. When you do the research you will find that there is not a great deal of agreement on exactly what is what with Peripheral Neuropathies and just how you pin down CIDP. After all - they mostly do not even understand the mechanisms and underlying causes (the etiology). Only about 30% of patients can even identify some start point or precipitating event.
It is very hard to study because it is so rare (don't you feel lucky....). The problem is finding a cohort of people without CIDP who then develop CIDP during the study - imagine the difficulty! Probably need millions in the start group!
Mostly they start after the event and try to work back. Since some onset is really slow - how do they do that?
My current treatment is IVIg. Steroidal treatment is always a last resort (or if IVIg does not work) because the "cure" is likely to be worse than the disease - too many nasty adverse events associated with steroids.
For research I use Google Scholar. (not Google).
You are so right. It's rare and there seem to be so many variations in how it presents itself. Who knows what makes our bodies mistakenly attack our nervous system. Is it because we purposely try to force attacks through inoculations and we genetically modify our foods? Is it because we exist in a toxic environment of our own creation? Is it due to climate change or some slow chemical terrorist attack? Maybe it's Bush/Obama's fault.
For us, the immediate concern has to be how do I stop the progression? And how do we do that? Through desperate infusions of IVIG or even plasma exchange. We ingest handfuls of nerve and pain pills and inject ourselves with man made hormones. We change our diets, we pray and meditate, we try acupuncture and eastern medicine, and we use assistive devices to aid in our mobility. Nothing seems too extreme, when it seems death or at least a miserable existence is in the offing.
I started with IVIG and my hand strength was mostly restored immediately. But then it stalled. I was getting worse and worse. So we started Solumedrol infusion too and I felt more energetic and slowly stopped getting worse, it seemed. Now, I'm hoping to go from infusions every two weeks to every three. I'm going to the gym, but even though I see some improvement, I'm not quite sure what it's doing to me internally. I have braces and a cane to help me get around and a wheelchair for when I need it. I don't seem to be getting better and my doctor just shakes his head, as if I should be.
Good luck and thanks for the post!
Well right now I am still stuck. The doctor the did my nerve study was fired because he was telling everyone they had a neuromuscular disease. So I had a choice between doing the spinal tap or another nerve study. Because I studied the disease so much and knew that the protein doesn't show up in many people, and the spinal tap is becoming less of a tool to diagnose CIDP, I chose another never study.
So I went last Thursday for the study. I wasn't very happy when I found out that in no way could the previous doctor change any of the results that he had previously recorded. So I know there are names for the shocking and then the needle insertion , but that is all recorded into the computer and I think it then goes into the main frame of the hospital. I asked the tech first if the previous doctor could have changed those results and she said no, and then the doctor who was to do the needle part and she also confirmed that. He only wrote the report from what the computer gave on the tests saying I had CIDP.
So because of this the doctor decided not to do the needle part and this irritated me since my appointment was for noon and it was now almost 2:30. Then she didn't seem to want to listen to me. I have a cervical neck injury that gives me very hyper reflexes which are not usually seen with CIDP. So she was saying it make it harder to diagnose. I say thats a bunch of crap because the neck injury causes on thing doesn't mean the disease it not possible. I was ok with her going back and discussing everything with my neurologist to make a determination, but what if she missed something because she didn't ask a question?
She also told me that all this pain in my lower extremities may be being caused by my neck injury. So I told her yes I have some type of motor sensory neuropathy and I am aware that can be caused by the neck injury but the cause from that comes from trauma. She also didn't think I had been taking enough Gaberpentin which I am no longer on. It was making me go into a dark whole. I know it works well for some people but it wasn't helping me and making me depressed. Nor is the fentanyl patch so I'm getting off that too. If a pain medication is not working I don't see any reason to take it or any other medication that isn't working for the pain especially if it's giving you dark thoughts.
So I"m waiting for the conclusion. This doctor also i believe thinks I should be doing physical therapy. I do think all of us should move as much as we can but for me I can do as much as I can but if I do to much then it's only going to put me down and I've been through so much physical therapy in the past with absolutely no helping my situation I have come to the conclusion that it doesn't help me. I've had to learn on my own what I can and cannot do.
At least I"m finally out of that dark whole I've been in for so long and I got out and did a little gardening this weekend. Nothing to seriously but it did cause a great deal of pain which I ended up sleeping off yesterday. I feel a bit recovered today and may this week try to go to the grocery store by myself.
One thing I have noticed is that every year I have come back and been able to do a great deal of things that I normally can't do. Last summer i came back for only a month and 1/2. I thought if I fought it and kept going I'd beat it but it didn't work. I feel like something regenerates in my body and I'm somewhat ok although I still have a great deal of pain. I don't think I'll get that come back this year but things have changed to some degree. I now have bladder control again. Thats about the only thing I have noticed but it's something. I think what ever is going on that my body each year has not been able to heal to be able to do more than usual and each year that time has gotten shorter until this year I don't think it will happen. Now all these years I thought it was some miracles from God that this was happening to me. And maybe it still was, but I can't keep from thinking that maybe I have had this disease longer than I have thought and my own body had been able to heal itself for a period up until now.
So my hopes is since I really don't think they can determine one or the other if I have CIDP they will at least treat it as if I do and not keep me suffering through the pain. If it works then great and I'd know.
I wish someone could also tell me which treatment they think is the best since both the Prednisone and the IVIG has about the same remission rate which I think is about a 55% chance. Prednisone I could afford right away but I am very aware of the side effects and worried how I'd ever sleep on a 100 mg a day which is what I was told with that I'd be given.
The IVIG i'd have to find help with being able to pay for since I'm already disabled and I make just barely to much on SSDI to get full Medicaid. But is it easier on the body?
I can only now sit, wait and pray that they will try something and do my best to keep moving. It's really hard since I've been house bound and laying on the sofa for almost a year and 1/2 with the exception of the month 1/2 last summer. I'm very weak but now ready and more able to start fighting this!
ALOHA NEW ONE,
I sympathize with your plight! All we can do is hang in there. And, exercise as much as you can, no matter what your state of disability.
I believe I've had an on-going battle with CIDP for over 15 years. I also had a cervical neck problem; degeneration at C2, and L4-L5, which influenced the course of a late CIDP diagnosed and the subsequent treatment with IvIg/Imuran.
Here is a story of my CIDP treatment; amusingly ridiculous, but true. I was diagnoses in October of 2013, and only received treatment, after a nine months delay, because my primary physician became sick with Chron's Disease and didn't read my diagnoses by a substitute neurologist at Kaiser (HMO). Previous to this, I was seen by five different neurologists who all told me it was diabetic neruopathy, even though I had a serious foot drop, shortness of breath and facciulaitons that looked exactly like ALS symptoms. I actually was diagnosed with ALS for an agonizing two week period until a better neurologist looked deeper into me.
Anyway, two months into IviG treatment the routine changed to two- weeks infusions intervals at 150 grams/month. On December 31 2013, I was at the very low point of a relapse cycle, and, while waiting for my infusion, I mumbled an utterance that "my bag is very heavy... it 's full of bombs." These were not words I meant to say to cause harm, only words of my subconscious that I said aloud because I was on two maxed-out dosages of painkillers, etc. The day before the Stalingrad train station was bombed and all over the TV news cycles.
Ten minutes later, while the nurse was just about ready to insert the infusion needle, a CODE GREEN was announced over the clinic intercom and the entire building began an evacuation. After I exited, with my bag containing my lunch, my laptop, books and spare clothes, I was pulled aside by a Maui police officer, handcuffed and read my Miranda rights.
Most of the staff and patients of the entire hospital were led past me during the evacuation. I stood, teetering and sweating and weak, about ready to collapse from fatigue and pain. I was handcuffed against a police cruiser, while two detectives questioned me. My bag was placed far away for fear that it contained a bomb. I was the man of the hour, so the detective said, shaking his head as he realized how ridiculous the events of day had become. Ten police cruisers were in the clinic parking lot and I was sure the bomb squad would arrive at any moment.
After I admitted to my utterance, I was placed in the police cruiser, driven one block to the Maui County jail, booked and placed in a solitary cell. I fell asleep in the cell. About two hours later, a police officer arrived and I was released on my own recognizance.
To make a long and worrisome story short: I was charged with a Class 1 felony, Terrorism, had to hire a lawyer and I now await my day in court. Luckily, my lawyer was able to get the charge lowered to a misdemeanor of Disorderly Conduct. So far it has cost me over $500.
And what I've discovered is that no one realizes what CIDP is all about and no matter what your state of health if you tip the administrative regulations at a hospital you receive no slack from them. All my doctors have called this charge ridiculous, that a sick individual rants and raves and says foolish things when groveling with the disabilities and pain of CIDP.
Kaiser terminated my health coverage. At first they wanted to terminate me in February, however my union told them otherwise and I will be covered until July 1, 2014. I now have a Kaiser security officer with me at all moments when I am at a Kaiser facility. However, I have made friends with all the guards and staff, and they actually carry my bags for me when i go in for my 5-6 hours of infusions.
I will switch to Blue Shield (called HMSA here) and a whole new routine will begin. I will probably get six months probation. So, watch what you say! These events were a Kafkaesque nightmare which only amplified the problems associated with CIDP, the side-effects and the slow, time-consuming IvIG infusions.
Talk about a fight! My CIDP, exacerbated by this one foolish utterance, changed the entire course of my battle against this disease.
Best to you and keeping fighting for strength; mentally, physically and spiritually!
NEWONE said:
Well right now I am still stuck. The doctor the did my nerve study was fired because he was telling everyone they had a neuromuscular disease. So I had a choice between doing the spinal tap or another nerve study. Because I studied the disease so much and knew that the protein doesn't show up in many people, and the spinal tap is becoming less of a tool to diagnose CIDP, I chose another never study.
So I went last Thursday for the study. I wasn't very happy when I found out that in no way could the previous doctor change any of the results that he had previously recorded. So I know there are names for the shocking and then the needle insertion , but that is all recorded into the computer and I think it then goes into the main frame of the hospital. I asked the tech first if the previous doctor could have changed those results and she said no, and then the doctor who was to do the needle part and she also confirmed that. He only wrote the report from what the computer gave on the tests saying I had CIDP.
So because of this the doctor decided not to do the needle part and this irritated me since my appointment was for noon and it was now almost 2:30. Then she didn't seem to want to listen to me. I have a cervical neck injury that gives me very hyper reflexes which are not usually seen with CIDP. So she was saying it make it harder to diagnose. I say thats a bunch of crap because the neck injury causes on thing doesn't mean the disease it not possible. I was ok with her going back and discussing everything with my neurologist to make a determination, but what if she missed something because she didn't ask a question?
She also told me that all this pain in my lower extremities may be being caused by my neck injury. So I told her yes I have some type of motor sensory neuropathy and I am aware that can be caused by the neck injury but the cause from that comes from trauma. She also didn't think I had been taking enough Gaberpentin which I am no longer on. It was making me go into a dark whole. I know it works well for some people but it wasn't helping me and making me depressed. Nor is the fentanyl patch so I'm getting off that too. If a pain medication is not working I don't see any reason to take it or any other medication that isn't working for the pain especially if it's giving you dark thoughts.
So I"m waiting for the conclusion. This doctor also i believe thinks I should be doing physical therapy. I do think all of us should move as much as we can but for me I can do as much as I can but if I do to much then it's only going to put me down and I've been through so much physical therapy in the past with absolutely no helping my situation I have come to the conclusion that it doesn't help me. I've had to learn on my own what I can and cannot do.
At least I"m finally out of that dark whole I've been in for so long and I got out and did a little gardening this weekend. Nothing to seriously but it did cause a great deal of pain which I ended up sleeping off yesterday. I feel a bit recovered today and may this week try to go to the grocery store by myself.
One thing I have noticed is that every year I have come back and been able to do a great deal of things that I normally can't do. Last summer i came back for only a month and 1/2. I thought if I fought it and kept going I'd beat it but it didn't work. I feel like something regenerates in my body and I'm somewhat ok although I still have a great deal of pain. I don't think I'll get that come back this year but things have changed to some degree. I now have bladder control again. Thats about the only thing I have noticed but it's something. I think what ever is going on that my body each year has not been able to heal to be able to do more than usual and each year that time has gotten shorter until this year I don't think it will happen. Now all these years I thought it was some miracles from God that this was happening to me. And maybe it still was, but I can't keep from thinking that maybe I have had this disease longer than I have thought and my own body had been able to heal itself for a period up until now.
So my hopes is since I really don't think they can determine one or the other if I have CIDP they will at least treat it as if I do and not keep me suffering through the pain. If it works then great and I'd know.
I wish someone could also tell me which treatment they think is the best since both the Prednisone and the IVIG has about the same remission rate which I think is about a 55% chance. Prednisone I could afford right away but I am very aware of the side effects and worried how I'd ever sleep on a 100 mg a day which is what I was told with that I'd be given.
The IVIG i'd have to find help with being able to pay for since I'm already disabled and I make just barely to much on SSDI to get full Medicaid. But is it easier on the body?
I can only now sit, wait and pray that they will try something and do my best to keep moving. It's really hard since I've been house bound and laying on the sofa for almost a year and 1/2 with the exception of the month 1/2 last summer. I'm very weak but now ready and more able to start fighting this!
Thank you so much for sharing your story. I have gone to the emergency room twice now in pain. Mostly because of fear of my thoughts I had of taking illegal drugs and suicidal thoughts, but I was careful in what I said. Of course I got no help but a bill for going to the emergency room. The last time I went they didn't even know what CIDP was nor did they even recommend any of their own neurologist so I find it a very strange experience.
I really feel for you and your situation and wish I could stand before a court and testify that certain drugs make you do crazy things. I finally took matters into my own hands and asked to be taken off some of my medications and finally feel a bit mentally like myself again although my forgetfulness is still there.
I had one other time that I had pulled over to text in a rural area because texting is illegal here while driving. I was on about 15 medications at the time but my sister was trying to call and couldn't get through so I pulled off into a ditch. It was a dry hot summer so I wasn't worried and the ditch was small. Well I finally got a signal and we were able to talk. Then I noticed I was stuck in the ditch because the farmer had irrigated his field and the run off went into the ditch and I was unable to get out. A car came by and said he would be right back to pull me out. Well instead he called the Sheriff and when the Sheriff got there I couldn't answer any questions, tell any names and I was quickly hand cuffed put in the back of the car for 3 hours. He wouldn't let me use my phone and I couldn't remember anyones name or phone number. We had to sit there until a tow truck came to get my truck. I was able to slide my cell phone out while he wasn't paying attention and look though my text and texted a friend that was a social worker and get the number which I then gave to the officer. Luckily my friend explained that I was put on a bunch of new medications and he let me go but I had to be driven and my truck towed to an ATM machine where I had to pay the fun $300 for the tow. So I do understand what medications can do. I was put on all these medications by a primary care doctor without my neurologists knowing. I had thought the doctor was in touch with my neurologist but he hadn't been notified. I was much luckier than you as I could have been arrested for a OWI which here would have been thousands of dollars and I couldn't have ever got that off my record at all.
I think with all medications we need to be watched more especially if we are on multiple meds. But I came from growing up in a rural town where I had the same doctor until I graduated college. I thought all doctors were good and only helped you. I certainly know much better now, but with pain medications I think we all just need to be careful. I'm trying my best to get off what I can and deal with the pain since the strongest one I am on has no effect what so ever.
I wonder how many others have gone through these types of things. I think yours must be the worst I have heard, but it certainly brings awareness to everyone and I hope many people will read your post.
estaban said:
ALOHA NEW ONE,
I sympathize with your plight! All we can do is hang in there. And, exercise as much as you can, no matter what your state of disability.
I believe I've had an on-going battle with CIDP for over 15 years. I also had a cervical neck problem; degeneration at C2, and L4-L5, which influenced the course of a late CIDP diagnosed and the subsequent treatment with IvIg/Imuran.
Here is a story of my CIDP treatment; amusingly ridiculous, but true. I was diagnoses in October of 2013, and only received treatment, after a nine months delay, because my primary physician became sick with Chron's Disease and didn't read my diagnoses by a substitute neurologist at Kaiser (HMO). Previous to this, I was seen by five different neurologists who all told me it was diabetic neruopathy, even though I had a serious foot drop, shortness of breath and facciulaitons that looked exactly like ALS symptoms. I actually was diagnosed with ALS for an agonizing two week period until a better neurologist looked deeper into me.
Anyway, two months into IviG treatment the routine changed to two- weeks infusions intervals at 150 grams/month. On December 31 2013, I was at the very low point of a relapse cycle, and, while waiting for my infusion, I mumbled an utterance that "my bag is very heavy... it 's full of bombs." These were not words I meant to say to cause harm, only words of my subconscious that I said aloud because I was on two maxed-out dosages of painkillers, etc. The day before the Stalingrad train station was bombed and all over the TV news cycles.
Ten minutes later, while the nurse was just about ready to insert the infusion needle, a CODE GREEN was announced over the clinic intercom and the entire building began an evacuation. After I exited, with my bag containing my lunch, my laptop, books and spare clothes, I was pulled aside by a Maui police officer, handcuffed and read my Miranda rights.
Most of the staff and patients of the entire hospital were led past me during the evacuation. I stood, teetering and sweating and weak, about ready to collapse from fatigue and pain. I was handcuffed against a police cruiser, while two detectives questioned me. My bag was placed far away for fear that it contained a bomb. I was the man of the hour, so the detective said, shaking his head as he realized how ridiculous the events of day had become. Ten police cruisers were in the clinic parking lot and I was sure the bomb squad would arrive at any moment.
After I admitted to my utterance, I was placed in the police cruiser, driven one block to the Maui County jail, booked and placed in a solitary cell. I fell asleep in the cell. About two hours later, a police officer arrived and I was released on my own recognizance.
To make a long and worrisome story short: I was charged with a Class 1 felony, Terrorism, had to hire a lawyer and I now await my day in court. Luckily, my lawyer was able to get the charge lowered to a misdemeanor of Disorderly Conduct. So far it has cost me over $500.
And what I've discovered is that no one realizes what CIDP is all about and no matter what your state of health if you tip the administrative regulations at a hospital you receive no slack from them. All my doctors have called this charge ridiculous, that a sick individual rants and raves and says foolish things when groveling with the disabilities and pain of CIDP.
Kaiser terminated my health coverage. At first they wanted to terminate me in February, however my union told them otherwise and I will be covered until July 1, 2014. I now have a Kaiser security officer with me at all moments when I am at a Kaiser facility. However, I have made friends with all the guards and staff, and they actually carry my bags for me when i go in for my 5-6 hours of infusions.
I will switch to Blue Shield (called HMSA here) and a whole new routine will begin. I will probably get six months probation. So, watch what you say! These events were a Kafkaesque nightmare which only amplified the problems associated with CIDP, the side-effects and the slow, time-consuming IvIG infusions.
Talk about a fight! My CIDP, exacerbated by this one foolish utterance, changed the entire course of my battle against this disease.
Best to you and keeping fighting for strength; mentally, physically and spiritually!
NEWONE said:Well right now I am still stuck. The doctor the did my nerve study was fired because he was telling everyone they had a neuromuscular disease. So I had a choice between doing the spinal tap or another nerve study. Because I studied the disease so much and knew that the protein doesn't show up in many people, and the spinal tap is becoming less of a tool to diagnose CIDP, I chose another never study.
So I went last Thursday for the study. I wasn't very happy when I found out that in no way could the previous doctor change any of the results that he had previously recorded. So I know there are names for the shocking and then the needle insertion , but that is all recorded into the computer and I think it then goes into the main frame of the hospital. I asked the tech first if the previous doctor could have changed those results and she said no, and then the doctor who was to do the needle part and she also confirmed that. He only wrote the report from what the computer gave on the tests saying I had CIDP.
So because of this the doctor decided not to do the needle part and this irritated me since my appointment was for noon and it was now almost 2:30. Then she didn't seem to want to listen to me. I have a cervical neck injury that gives me very hyper reflexes which are not usually seen with CIDP. So she was saying it make it harder to diagnose. I say thats a bunch of crap because the neck injury causes on thing doesn't mean the disease it not possible. I was ok with her going back and discussing everything with my neurologist to make a determination, but what if she missed something because she didn't ask a question?
She also told me that all this pain in my lower extremities may be being caused by my neck injury. So I told her yes I have some type of motor sensory neuropathy and I am aware that can be caused by the neck injury but the cause from that comes from trauma. She also didn't think I had been taking enough Gaberpentin which I am no longer on. It was making me go into a dark whole. I know it works well for some people but it wasn't helping me and making me depressed. Nor is the fentanyl patch so I'm getting off that too. If a pain medication is not working I don't see any reason to take it or any other medication that isn't working for the pain especially if it's giving you dark thoughts.
So I"m waiting for the conclusion. This doctor also i believe thinks I should be doing physical therapy. I do think all of us should move as much as we can but for me I can do as much as I can but if I do to much then it's only going to put me down and I've been through so much physical therapy in the past with absolutely no helping my situation I have come to the conclusion that it doesn't help me. I've had to learn on my own what I can and cannot do.
At least I"m finally out of that dark whole I've been in for so long and I got out and did a little gardening this weekend. Nothing to seriously but it did cause a great deal of pain which I ended up sleeping off yesterday. I feel a bit recovered today and may this week try to go to the grocery store by myself.
One thing I have noticed is that every year I have come back and been able to do a great deal of things that I normally can't do. Last summer i came back for only a month and 1/2. I thought if I fought it and kept going I'd beat it but it didn't work. I feel like something regenerates in my body and I'm somewhat ok although I still have a great deal of pain. I don't think I'll get that come back this year but things have changed to some degree. I now have bladder control again. Thats about the only thing I have noticed but it's something. I think what ever is going on that my body each year has not been able to heal to be able to do more than usual and each year that time has gotten shorter until this year I don't think it will happen. Now all these years I thought it was some miracles from God that this was happening to me. And maybe it still was, but I can't keep from thinking that maybe I have had this disease longer than I have thought and my own body had been able to heal itself for a period up until now.
So my hopes is since I really don't think they can determine one or the other if I have CIDP they will at least treat it as if I do and not keep me suffering through the pain. If it works then great and I'd know.
I wish someone could also tell me which treatment they think is the best since both the Prednisone and the IVIG has about the same remission rate which I think is about a 55% chance. Prednisone I could afford right away but I am very aware of the side effects and worried how I'd ever sleep on a 100 mg a day which is what I was told with that I'd be given.
The IVIG i'd have to find help with being able to pay for since I'm already disabled and I make just barely to much on SSDI to get full Medicaid. But is it easier on the body?
I can only now sit, wait and pray that they will try something and do my best to keep moving. It's really hard since I've been house bound and laying on the sofa for almost a year and 1/2 with the exception of the month 1/2 last summer. I'm very weak but now ready and more able to start fighting this!