I am fairly new to this disease. I was diagnosed back in April, 2011. I have been on IVIg now every 21 days for the year. I seem to be doing fairly good as long as I stay on my 21 day therapy. My question is why do symptoms come and go sometimes for no reason. I can be going along doing just fine, hardly having any symptoms and all the sudden my hands start to go numb at night or my foot starts to vibrate for a few days. Then poof, all symptoms disappear again. I keep a log and it is not linked to any specific time during my IVIg treatment. I was thinking maybe it is because I am at the end of my 21 days but that isn't the case. Sometimes it is at day 8 and sometimes day 15. This time I started to have a vibration in my left foot around day 12 after IVIg it lasted for about 5 days, my knees started to feel stiff and heavy and then my hands started to fall asleep at night and wake me up because they were completely numb. I kind of freaked out and called the neurologist about the symptoms. I am due for IVIg on Sunday (at 23 days) and was worried I had to have IVIg earlier or keep the dose at 40grams (we planned to decrease my dose this treatment to 35 grams). But then all the sudden i am feeling good again. Last night I did not have the vibration in my feet and my hands did not go numb. I feel good this morning with hardly any symptoms again. Does anyone know what could cause symptoms to flare up and then disappear mid IVIg? Is there something I might be doing causing these periodic flare ups? How do you know when to notify your neurologist and when to ride out the flare up and ignore it? Just when you think you might be getting a handle on this darn disease and find a new normal it throws you down.
i have yet to start treatment, but my symptoms tend to flair. do you notice a change with your cycles. right before my period all hell breaks loose and for me things get really bad every 6-8 weeks for no apparent reason.
I am the same way as you, I have good and bad days for no reason I can see. CIDP is different for everyone it seems. I tire not to worry too much about it when I have a flare up because for the most part it’s just annoying and passes in a few hours or at most a few days then I am fine again for a few days then it’s back again or something new starts to twitch or feel strange. I have just come to accept it as the norm for me now.
Some things I have noticed but are not ture all the time is. Stress seems to be something that makes me worse I try to keep my stress level down as much as I can. I also getting sick makes me worse most of the time.
I agree stress and getting sick are the worst. The last 2 bad episodes were pretty bad and both times i was sick. One with a throat infection and the other was followed by a really bad head cold. I have high pressure in the brain ( too much spinal fluid), so i thought the vibrating feet was caused by this due to pressure on the brain stem, but i gues it is a symptom. When it first started i thought i left my cell phone on my bed on vibrate and that my foot was leaning on it when it was going off lol. do yu get sensations of heat running down your legs, not like painful but it almost feels like your running a blow dryer down your leg
I don't get the heat sensation but when I was diagnosed with CIDP I went into menopause the next month or so. My doctor said CIDP did not cause my menopause but I think it did. I was very regular and all the sudden on came horrible hot flashes and other symptoms of menopause. As for stress, yes I do see that when I stress I feel more symptoms and when I am sick for sure. I am just learning how to cope with such ups and downs in my life. I was always so healthy before CIDP. I never got sick and if I did it only slowed me down for a day or two but I never stayed home sick hardly ever. Now I feel icky most of the time and I try not to think or dwell on any of my symptoms or they seem worse. Actually when I am active doing something I love I forget about any symptoms and feel my best. It is when I slow down and have time to sit and think that I concentrate on symptoms and realize that I am having symptoms. I helped my sister move last Saturday and I was on my feet ALL day from 9 AM to 9 PM lifting heavy boxes and going up and down three flights of stairs carrying the boxes. I think that is why I had such a bad flare up this week and just now things are calming down. I of course freaked out and called the clinic about my flare up and did not connect it to the move until just now. I forget I have to take it easy and not go as fast or hard as I use to. But I have a personality that won't stop and lay down for this disease so I go on the best I can without letting it get the best of me. But some days when I am alone and scared I find I break down and have a very good cry and pitty party for a while. But then I wipe my eyes and move on. Live moves on with or without me so I better suck up and stop feeling this way. Oh how I wish some days that I never, ever got that darn H1N1 flu shot back in 2010.
"I helped my sister move last Saturday and I was on my feet ALL day from 9 AM to 9 PM lifting heavy boxes and going up and down three flights of stairs carrying the boxes. I think that is why I had such a bad flare up this week and just now things are calming down."
I suspect this is the answer. I have talked to several doctors about exercise, and they all said, "Exercise to tolerance," which didn't tell me anything. Finally, I pinned one down and said, "Tell me what exercise to tolerance means!" He looked at me with surprise, like he couldn't believe I didn't understand. Then he said, "If you feel bad the next day, you did too much." I have found that if I overdo it, I actually feel bad for two or three days - longer if I have trouble sleeping.
But, there seems to be a disagreement as to whether too much exercise can actually be harmful - some say it is, others say it only makes you feel lousy. So, I'm not sure about that. But I try not to overdo it, anyway.
By the way: I would love to feel good enough to help someone move. Just going up and down three flights of stairs a few times would be enough to wipe me out, never mind carrying heavy boxes. So, I think you were caught pretty quickly, and are getting good treatment.
Well, I wish that I knew the answer to that. I am no longer taking IVIG. My neurologist has becided the benefits did not outweigh the risks for me. My next course of treatments will be plasmapharesis with chemo at the same time. However for some reason I am stable. I am not needing a cane, wore boots with a fairly significant heal yesterday (push it up) so woot.
But, I am concerned about my diagnosis. So many things complicate mine. And, now I have a heart issue that has crept in. I am going to post about it, if I have not. It ain't pretty. The thing that bugs me the most about CIDP is the comesy/goesy thing and the neuro's attitude here. I attend a clinic in a learning hospital and I feel like a chimp or something. They are huge on research. The Dr. who left there and went into private practice who misdx me with MS originally, and had me giving myself a shot of betaseron every other day for four years, well, I got my med records from him. He had in them that I have dementia and have had brain surgery. I guess that I do because I flipping do not remember having brain surgery, they must have caused dementia with the surgery and I forgot it all. Can you believe that? I am going to have to take this to the medical board.
Yes Bill, I was diagnosed within 5 months of symptom onset. My symptoms started 10 days after I received the H1N1 vaccine. I was very persistant with my doctor. I knew something was wrong and when my general doctor said it was nothing I went immediately to a neurologist because I did not believe her. I know my body and new it was sick. I also wonder when I have flare ups if my body is enduring further damage or if it is just symptoms and not actual more deteriation of the nerves. I don't want to have any more damage to my nerves than I already have and get worried with every twitch or vibration or pain that it is more damage happening. No one seems to have an answer to this, not even the neurologists. I feel so alone sometimes dealing with this disease. I don't look sick and I don't act sick most days so when I am having a flare up my family doesn't understand why I am cranky or depressed. They don't know how much suffering you do inside where people can't see. The think if it doesn't look broken then it isn't broken. I think they think I am a hypochrondriac if I complain of pains that don't seem real. I don't want to seem sick to my 8 year old daughter either so I hide most of what is happening to me and cry when she can't see me. I don't want to scare her or take away her happy, healthy mommy.
Sorry about all your problems. I can't wait until the day that they find some type of treatment to stop this disease. The SCT is very promising but it is too invasive right now. I just don't have 3 to 9 months of my life to give up right now. I could not disappear from work for 3 months and I could not disappear from being mommy either. I hear people are getting better and not needing IVIG after the SCT but I just don't know where I would get the time to persue such a treatment. Hopefully with the research that they are doing they will find a way to streamline the process so it can be done as an outpatient and at other hospitals around the states so you could have it done close to your home. I keep my hopes up. uncomfortably numb said:
Hey Chirpy,
Well, I wish that I knew the answer to that. I am no longer taking IVIG. My neurologist has becided the benefits did not outweigh the risks for me. My next course of treatments will be plasmapharesis with chemo at the same time. However for some reason I am stable. I am not needing a cane, wore boots with a fairly significant heal yesterday (push it up) so woot.
But, I am concerned about my diagnosis. So many things complicate mine. And, now I have a heart issue that has crept in. I am going to post about it, if I have not. It ain't pretty. The thing that bugs me the most about CIDP is the comesy/goesy thing and the neuro's attitude here. I attend a clinic in a learning hospital and I feel like a chimp or something. They are huge on research. The Dr. who left there and went into private practice who misdx me with MS originally, and had me giving myself a shot of betaseron every other day for four years, well, I got my med records from him. He had in them that I have dementia and have had brain surgery. I guess that I do because I flipping do not remember having brain surgery, they must have caused dementia with the surgery and I forgot it all. Can you believe that? I am going to have to take this to the medical board.
I hear you about the hypochrondia, and it is so frustrating. I went through that trying to get to a cardiologist. It was something like this:
Me: my heart is skipping a lot. Neuro: let's us do an ekg Me: (eyes rolling) ok. Me: my heart is skipping a LOT Neuro: let's us do an ekg Me: (rolling eyes, tapping foot) HOKAY. I did this times twenty.
They send me to the cardio, he is so blase, and so "oh Jan, you so crazy girl, it is gonna be fine, yada yada yada". 48 hours later, ring ring ring: Me: Hello, Cardiologist (head Dr. from Africa): "You come to hospital now, straight to CCU, you no drive" Me: "who is this" Cardio head dr: "now, you come now" Me: "am I dying?" Cardio Dr.: (after very long pause) no.
I never even saw the head Dr. when I was there, only the resident or someone under him.
Once upon a time I had to fight for my right to parrrrttty. Now, it is to live. go figure.
I have just finished my 1st round of IVIG (3 days of infusion) and have not seen any improvement. My feet hurt more if anything. I called my neuro and he said the IVIG should not cause the pain to increase. Those of you who have had IVIG can you tell me how long it takes to start seeing improvement? My neuro said to increase the Lyrica and see if that helps. Any experiences you have had would be most appreciated.
uncomfortably numb, i have the heart issues big time and ekg upright is abnormal but not laying down? lol. It was the heart stuff that caused my cardiologist to refer me to a specific neuro in this field. Take in mind ive made 100 er trips, 4 states 50 doctors later and 17 months later to get to this point. Unable to walk or stand or even comb my hair no one would help me because i have another neurological issue they were blaming that. I am quite angry, because I am unable to leave my house. I cant wait to get better and get into rehab so i can go back to all those docs and blast them. uncomfortably numb do you have autonomic disfunction?
uncomfortably numb said:
Hey Chirpy,
Well, I wish that I knew the answer to that. I am no longer taking IVIG. My neurologist has becided the benefits did not outweigh the risks for me. My next course of treatments will be plasmapharesis with chemo at the same time. However for some reason I am stable. I am not needing a cane, wore boots with a fairly significant heal yesterday (push it up) so woot.
But, I am concerned about my diagnosis. So many things complicate mine. And, now I have a heart issue that has crept in. I am going to post about it, if I have not. It ain't pretty. The thing that bugs me the most about CIDP is the comesy/goesy thing and the neuro's attitude here. I attend a clinic in a learning hospital and I feel like a chimp or something. They are huge on research. The Dr. who left there and went into private practice who misdx me with MS originally, and had me giving myself a shot of betaseron every other day for four years, well, I got my med records from him. He had in them that I have dementia and have had brain surgery. I guess that I do because I flipping do not remember having brain surgery, they must have caused dementia with the surgery and I forgot it all. Can you believe that? I am going to have to take this to the medical board.
I can tell you that both the neurologist and my physiotherapist told me to expect a recovery that continues to have peaks and valleys. I believe that when your nerves are being attacked, and when they are trying to heal you get this constant flucuation of symptoms. That is just the way it is. I try to focused and find the things to celebrate each day . You can choose to celebrate the positives or be overwhelmed with the negatives. It isn't easy, I know. Good luck.
Every one handles their life the best they can, and everyone is natured differently. What may be a matter of half full for one may be totally empty for another due to a completely different set of circumstances. It is ok to not be ok. We are all different, and I have been through so much, were I to lay it all out, and date it, it is more overwhelming than most ppl would ever imagine. My sense of humor gets me through some days and other days it is my African Gray parrot that starts crying when I do, and sounds, sobs, just like me, and makes me laugh my rear off. Her name is Malaika, and in some African language, that means angel. She is a rescue, I did not name her, but trust me when I tell you, she is an angel, sent to me I have no doubt. I have nine parrots, and the two grays, aged 14 & 45, are so smart, they are scary. They save me. So, we do what we can, and it is ok when we fall down. Physically and emotionally. No one should feel bad if they are not coping as well as someone else, this is a terrible disease with no answers and we need each other.
I love birds too!. I use to work at an animal hospital that specialized in birds and large parrots. I loved being around the birds all day long. They are so funny. I now only have a little parakeet but she makes me laugh all the time too. I am amazed all the personality that comes packed into such a little animal. Pets are the bests treatment when you are feeling down and depressed. I agree.
I got my IVIG yesterday... I made it to 23 days instead of my normal 21 days so I could get back on my Sunday morning schedule. Gosh, I feel so much better. I could tell by yesterday evening that the IVIG was doing it thing. My vibration and numbness in my feet started to go away. My hands are not burning and my legs are not heavy and sore. That stuff is a life saver. I hope I keep responding to IVIg for many, many years. Increased the rate I was given the infusion from 120 to 150 and still no headache today. I want to try and get my infusion time down from 5 hours to more like 3 hours.
As far as reducing the time on the IVIG: my place gives me a shot of Benadryl, two acetaminophen tablets, and something to drink before they start the IVIG. This is all to prevent any bad reaction, and I have never had a bad reaction. 'Course, I might just be one of the lucky folks who naturally doesn't have a reaction. But, if your facility doesn't do these things, you might ask about them.
I actually take two tylenol and one 180 mg Allegra at home 30 minutes before my infusion so that I don't have to wait when I arrive for them to give me the premeds and we can get started right away. Plus, if you ever look at your infusion bill at how much that they actually charge for the premeds it is outrageous... I could buy a years supply of Tylenol for the one charge on the bill! But yes, I do agree the premeds might be helping with me not having a reaction to the IVIg but rate also plays a part in the headache. My doctor said that the faster the rate the more chance of the bad headache even with the premeds. I actually got a headache the first time I ever got IVIG because they ran it in pretty fast. Have reduced the rate considerably from the first time and no headache since. But getting sick of long infusions so trying to ramp up the rate a bit each time to see what I can handle.
I am so glad to hear that you are getting a good result. It helped me a lot as well. When I had my first treatment of IVIG, I had a five day regimen, inpatient, and within a week or so after it was over I could lift my feet again. Prior to the treatment, I had to pull myself up steps, could not feel my legs and or feet very well from mid calf down, and my hands were buzzing. I did feel that it made the buzzing move to full arms but that abated. I have had maybe five treatments in total, over almost a year, with a reduction in the number of days each time, before he decided to stop them for me. I began to plateau with the benefit from them and my side effects were getting more severe. However, I do attribute my recovery to IVIG totally.
I love love love my birds. Of the nine, five are rescues. Those birds are the most rewarding ones as they come with wounds on the inside, usually, from being neglected and unfortunately, abused sometimes. I have one Grey who is 45 with only half a wing on one side who has never allowed anyone but me to touch him. I have had him two years now and that is so sad. For 42 years, that baby has been alone in rescues, well 40 years. He came to the US after being wild caught and was first owned by a person who mistreated him and did not get care for a broken wing. I am his first "person" and it is such a delight to see him happy, dancing and talking and kissing me. He lays upside down in my arms like a baby. I adore him.
uncomfortably numb, i have the heart issues big time and ekg upright is abnormal but not laying down? lol. It was the heart stuff that caused my cardiologist to refer me to a specific neuro in this field. Take in mind ive made 100 er trips, 4 states 50 doctors later and 17 months later to get to this point. Unable to walk or stand or even comb my hair no one would help me because i have another neurological issue they were blaming that. I am quite angry, because I am unable to leave my house. I cant wait to get better and get into rehab so i can go back to all those docs and blast them. uncomfortably numb do you have autonomic disfunction?
Hi
I am so sorry that I missed this, Yes I do have autonomic dysfunction, at least the cadiologist is convinced that I do. He is making me an appt. with a clinic at Chapel Hill for autonomics. I hope that they can find the cause. I believe that it is possible that they have not even properly diagnosed me. My symptoms are gastro, ringing in my ears, this electrical issue with my heart, body temperature problems
Hi there. My symptoms generally arnt that bad and Ive had IVIg which didnt appear to do anything and Steroids which appeared to help at the time but no long term effects.
I agree with you about symptoms coming and going, maybe there is no defintive answer as the disease isnt fully understood, the one thing I notice is that a minor cold or flu can really set the symptoms going and then its quite bad for a few days before getting better.