I got 2 days of IVIG and ended up in the ER with a fever and really bad headache. For about 3 weeks I was very tired would run out of breath just walking and was just pretty missed up. I think they pushed it to fast but I may just be one of the people who can't handle the drug. With that being said on the 4 week all my problems went away for 4 days. I felt normal again no pain no tingling no twitching everything was "normal".
I hear it can take some people a few months to see improvement. It took me 4 weeks to see anything. I guess the IVIG stopped the attack on my nerves and it just took about 4 weeks for the side effects to wear off and my body to fix the damage.
JanaC said:
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.
Does anyone out suffer from facial numbness? It affects my speech. Slurred words, unable to form words etc.? Any comments / experience is appreciated. Does it go away with treatment? Thanks again.
we are dead on for the same symptoms. Do you get any headaches or neck pain. I am actually going to duke in Durham in 2 months to get worked up for a spontaneous cerebral spinal fluid leak. I was so admanat that i had chiari malformation. Jana, i have the slurred speech and facial numbness and all kinds of other shit, im getting tired of this. I have elevated pressure in the brain, not blood pressure, but spnal fluid and when its too high, i slurr like a drunk, fall over etc
uncomfortably numb said:
js121499 said:
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
we are dead on for the same symptoms. Do you get any headaches or neck pain. I am actually going to duke in Durham in 2 months to get worked up for a spontaneous cerebral spinal fluid leak. I was so admanat that i had chiari malformation.
uncomfortably numb said:
js121499 said:
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
Ok, this is where I am now. It appears that the autonomics clinic in Chapel Hill is not active now, my heart Dr. said he was not sure when I was in there last month, so I got a call from the Mayo Clinic in Florida. He referred me there. I have not called them back yet. They left a message on my cell phone. I have to see what all my insurance will cover if I travel there to be assessed. I am pretty sure that they pay the hotel and food costs and my husband retired from an airline so we fly free. I just need to see what is what.
My spinal protien is 123, But I am complicated by the fact that I have a tumor or something growing in my brain stem in the mid brain area. It is very slow growing. But, it could be the cause of the pressure. My family Dr. feels that I have something that has not been diagnosed ever. A new disease. The tops of my feet began turning dark brown, and the sking became very thick and striated about seven years ago. No one could diagnose that. The guess were everything from HPV, another warty thing, a disease that is indicative of a tumor somewhere else, a cancer, and is fatal, to them telling me I wear ill fitting shoes. One Dr. told me that I scratch my feet in my sleep. Idiot, total idiot. It has since progressed to my knees. And, there are knots that have formed underneath the skin on the top of my right foot. I have been to Duke for this, all sorts of biopsies have been done. Nothing has been recognized. The skin now appears smooth with NO pattern in it.
Oh, and when I went to the Dr. two weeks ago, the neuro, he found a reflex in my left elbow, the first one that I have had anywhere in my body in five years! How about that! I have been able to wear heels too, and my boots. So, I am in remission or better or something. I have not had IVIG since early January, and no other treatments. BUt, I have the stupid ICD implant, and I have not been back to my oncologist, so I have to do that mess for the breast cancer and have to deal with my brain tumor thingy. I just want to get better all over.
omg wow you are going through so much. i have high brain pressure and it beats the crap out of my brainstem. autonomic crap gos hand in hand with that area. my daughter had a brain tumor near the brain stem and her first symptoms were cardiac thats why i took her to the cardiologist and after it was removed, low and behold the autonomic stuff stopped. btw jess has thick skin on her feet. please look up cowdens syndrome. and PTEN mutation. the foot stuff and slow growing tumor is what clused them in and on top of that she also has proteus syndrome. btw pten causes breast cacer, thats the most serious issues with that mutation.
I have been living with it for 11 years. Everything you describe, I still go through a few times a week.
Nothing you are doing is causing this to happen. It is just part of CIDP.
I stopped notifying my doctor when this happens because it happens so often. No amount of IVIg actually stops anything for me, so I just deal with it now. I usually just put on socks, and wear a huge hoodie to keep my hands from touching things (I pull the sleeves over my hands), and wear the hood at night so my face is protected from touching the sheets. There are even times I wear knitted gloves (bought at Walmart) to sleep in. Weird huh? I still can't figure out why laying on bed sheets is so painful for me.
In the beginning I called my doc for EVERYTHING!!! Now??? The only time I would call my doc is if I am not capable of doing anything, I am unable to move, or if I am having difficulty breathing.
Actually for the last 2 days I have been dealing with the vibration in my right foot, along with the pins and needle feeling, and burning (my left foot is just pins and needles) Both my wrists and hands have been feeling the same way, although the right side is worse.... along with the right side of my face/cheek. My skin is cold to the touch on my wrists, and feet. When I touch things like the table, the kitchen floor, the cement outside...the computer mouse in my hand, pretty much anything with a smooth coated surface...it hurts.
What works for me is.... I ignore it to the best of my ability. It is easier said than done. But with practice, and/or popping either prescription strength Advil, or taking a 1 Tylenol 3 to help alleviate some pain ... it does get easier.
Does anyone out suffer from facial numbness? It affects my speech. Slurred words, unable to form words etc.? Any comments / experience is appreciated. Does it go away with treatment? Thanks again.
I do. Infact right now I am. My face is numb, but there is an internal pins and needles thing going on. Which means, I can stick a pin into my cheek and not feel a thing, but I have pain radiating from the inside. Weird how that happens.
My speech goes as well. I jumble words, cant form words, slur my words. I just try to make the most of it. I used to cry a lot when this happened (tear up), but now I just roll with it. If people can't understand me, then I find another way to relay the message. :)
Does anyone out suffer from facial numbness? It affects my speech. Slurred words, unable to form words etc.? Any comments / experience is appreciated. Does it go away with treatment? Thanks again.
I do. Infact right now I am. My face is numb, but there is an internal pins and needles thing going on. Which means, I can stick a pin into my cheek and not feel a thing, but I have pain radiating from the inside. Weird how that happens.
My speech goes as well. I jumble words, cant form words, slur my words. I just try to make the most of it. I used to cry a lot when this happened (tear up), but now I just roll with it. If people can't understand me, then I find another way to relay the message. :)
Thanks Audrey, does this impediment come and go for you. Mine hasn't improved or gotten worse. I just stays there.
When I went back to work after breast cancer in 2004, what started me seeking neurological help was a thick tongue, and I would feel disconnected from the client who I was speaking with. I would sound like I had taken a drug, just out of nowhere, and could not follow the conversation and sometimes would change the convo. I was a financial coubselor. I also would have hyper sensitive body sensations, some of them sexual. And, it would drive me crazy, make me cry. If I was under pressure, it was worse. I had no idea what it was, and I still get this from time to time. I sometimes feel like my tongue wants to curl backwards, and I feel frustrated. I really am so overwhelmed with sensations and feelings that I do not even tell the dr about them, they are too many to list.
I know what you mean about "friends say you look so good." I was in the hospital once, and the nurse said, "You're the healthiest looking sick guy I've ever seen!" It is extremely frustrating. No one has any idea what you are undergoing, or the problems that you struggle with 24/7. I don't think my wife even believed it, until one day I fell in a parking lot, couldn't get up, and had to be taken to the emergency room. It's very tempting for other people to believe that you are just lazy, or looking for sympathy.
Thumper said:
I was diagnosed a few months ago with CIDP. Neurologists were confused for years thinking I had Multiple Sclerosis because I started with Optic Neuritis and other symptoms. Now that we know what the diagnosis is I was treated with IVIG....... which worked wonderful, at first, but caused a blood disorder so my Neurologist decided to do another treatment. He started me on Pulsed High Dose Dexamethasone. It's a powerful steroid and is one of the worst experiences I've ever had on any medication. I was in remisison for about a week and now I'm slipping backward. Started with tingling and the sensation of someone pouring warm water down my foot. I have balance problems, numbness in hands in feet, pain, trouble walking up and down stairs and fatigue. I know there a a lot more symptoms but because they change from day to day it's hard to remember all of them. Like you the more I exercise the worse the pain gets. Sometimes it feels like I'm walking on bloody stumps instead of my feet. I think the worse part of this disease is the aloneness ..... friends say "you look so good" I appreciate the compliment but instead I feel like death. I have good days and bad days and am very thankful for the good ones ! I have blurry vision today so you can read this ok..
I wonder if maybe it was the other way around? Is it possible you were starting menopause and that’s what brought on the CIDP? I swear (and my doctor says he can’t confirm) that my CIDP was triggered by pregnancy, then reoccurred when I went back on birth control pills. My infusion nurse says she has other patients who also seem to have symptoms tied to hormones.
wow i never thought of that. I had an ovary removed and then 2 years later half of the remaining ovary. My hormones are all off. I have polycystic ovarian syndrome. i get hotflashes, tachycardia the works. my doc insists i dont have menopause, it sure feels that way
I’d love to see research on possible relationships between hormones and CIDP. I don’t believe that my pregnancy or hormones caused it, but I think it was possibly a trigger and is linked to the severity of my symptoms. Here’s hoping for research on many things…
do you have an increase in symptoms around the time of your period. every month the week before my period i flair up really bad, so im adamant there is a cause and effect
Does anyone out suffer from facial numbness? It affects my speech. Slurred words, unable to form words etc.? Any comments / experience is appreciated. Does it go away with treatment? Thanks again.
I do. Infact right now I am. My face is numb, but there is an internal pins and needles thing going on. Which means, I can stick a pin into my cheek and not feel a thing, but I have pain radiating from the inside. Weird how that happens.
My speech goes as well. I jumble words, cant form words, slur my words. I just try to make the most of it. I used to cry a lot when this happened (tear up), but now I just roll with it. If people can't understand me, then I find another way to relay the message. :)
Thanks Audrey, does this impediment come and go for you. Mine hasn't improved or gotten worse. I just stays there.
I get the same exact way. I totally understand what you are talking about COMPLETELY.
uncomfortably numb said:
Audrey,
When I went back to work after breast cancer in 2004, what started me seeking neurological help was a thick tongue, and I would feel disconnected from the client who I was speaking with. I would sound like I had taken a drug, just out of nowhere, and could not follow the conversation and sometimes would change the convo. I was a financial coubselor. I also would have hyper sensitive body sensations, some of them sexual. And, it would drive me crazy, make me cry. If I was under pressure, it was worse. I had no idea what it was, and I still get this from time to time. I sometimes feel like my tongue wants to curl backwards, and I feel frustrated. I really am so overwhelmed with sensations and feelings that I do not even tell the dr about them, they are too many to list.
I been reading everyone posts and I been there with doctors about my heart, uncomfortable numb. Still going thru it with doctors....it is a never ending thing about the heart. OK I had a stent in my LD and had three of those stress tests and I fail one they thru me back into hospital and did another ango...so what was normal....I am not understanding all of this...I seem to be more normal by their tests either my blood work or other.
Something happen to me that hasn't happen to me before...I woke up during the night on Sat. I couldn't move or turn over or speak....I kept trying to speak...so I could call out for my husband....I kept trying to work my mouth...finally I said his name...but I kept trying to do that too..and finally he heard me and ask me what? lol I said with a big yell HELP. I was in pain too....finally laying there I started to get or able to turn over and move little bit at a time... then last night only 1/2 of me did something simular all my legs and arms...I was so scared both times...I can't tell you how scared I was. I had burning of both of my feet and the pins and needles going big time on all over my feet...and down the side of my left leg...then my hands were donig something with pins and falling asleep it felt like... I also felt like socks on just the bottom of my feet! only on the bottom...I try to reach to feel my feet with my hands but they were all numb. I was so scared... at least this time I lay still and waited for someone like grandkids or my husband come in and check on me so I could tell them I was trap...that is waht it felt like.
I lay for hour or more then I got to move my legs...still doing the pins and needles... I couldn't sleep I check my oxygen level I was at 94 w/it on....I needed help to get up but I am lucky I had my depens on....
but I was really worry why is this donig this to me....
I go see this morning my PCP by chance and I will tell him what happen...It scared me so badly I having trouble wrapping my mind around it.
other then that I have no threapy's, I have no med's for any of it, and I have a week to go before I see the new nero doctor in phx.