Also, ALS isn’t associated with tingling is it? Scared.
I'm sending you many good wishes thru all you are going thru....hope like me will fig it out what is wrong with us both.
I am too seeing today a specialist....I learn not to put so much hope in one visit.....but I think what we go thru it does that to us, putting hope on so much.
As you go thru your tests and if I get any new ones....I will be thinking about you and remembering your words....
thank you for sharing your story....I feel i am not alone going thru all of this. I have not had any other tests except tons of MRI's and EMG's.
I wish you the best of luck to find what you need....and help.
God Bless YOU
ruthie
All of the above and now swelling in feet. I am due a treatment. My anti acid i took to help while taking steriod made me dizzy had the neuro switch it. It is scary I am with you. awww
Muscle burning is not a symptom unless your overcompensating which means your feeling weakness. If you are not feeling weakness you may have something else (not CIDP). I'm sure you'll be fine.
I've had CIDP a while.
It started with Ungodly pain that felt like my upper arm bones had been surrounded with dry ice. The doctors repeatedly asked me if I had any burning or sharp pain. I had to truthfully answer no!! Then it moved into my chest then my other arm. Later that day it "traveled to my legs, though not as bad as my arms. This went on for months. When the pain left I had paralysis of my left hand, arm and my scalpea ( shoulder blade) "winged" due to paralysis there. My legs were "only" weak it took all the strength I could muster to walk 10 yards to my mail box.
Any of this sound familiar? Since I have diverticular disease and severe Asthma-which almost always leads to asthmatic bronchitis,. I will not do anything or have any treatment that affects my bodies ability to fight infection.
With mine it started with the inability to carry my guitar to my car, the ungodly pain came later. I found out I had five mini-strokes which left me partially paralysed in my left hand and arm. Gary
hi heather,i have dizzyness anfalling around as though im drunk,my doctor said i had virtigo at first but it dindt go,my ears are ready to go bang at any moment,the pain is unbearable,i sleep a lot due to c.i.d.p but my ears an dizzyness have made it worse,im on antibotics an 2 other tabs to help with the falling sensation i get,i havent been out since wednesday as im to dizzy an i walk with a stick anyway,i have had to miss my best friends daughters wedding as i cant stand with out toppleing,hope you are feeling better soon,i have had c.i.d.p 4 18yrs an still get pins,needles,funny feet what slap to the floor when i walk an my legs are in pain constantly.hear from you soon.xx
I know I'm chiming in late on this but your symptoms are so typical of mine. Although I've researched this illness for several years, I had no idea that my dizziness was part of it. Honestly, I've been trying to figure out the dizziness for quite some time, thinking it was another illness. I noticed the comment of 'walking like a duck'. That's a great way of putting it. It's called "drop foot". The ankles have less control and the feet sort of slap the ground. When my pain level is tollerable, I actually jog a little 'drop foot' style. You have to raise the knees a little higher, but it's kind of gratifying.
Welcome to the club! Before I was on IVIG, I was falling at least once per month (or more) but since I haven't fallen once. The term "walk like a duck" I believe comes from having to use a wider gate while walking to prevent losing one's balance. Since my symptoms were really noticeable in 2005 when I did have a drop right foot, I don't see how one could jog without strength in one leg and ankle, I couldn't. I ruined my favourite pair of jeans when I tripped over my drop foot and ended up on my knees with a large hole in the right knee of my jeans. Gary
yes! as my eyes used to be effected and of course from the drop foot. all these symtoms are cidp. i tried a whole assortment of "chemicals" to relieve nerve pain, they made things worse for me. i found help by using a magetic pad on my bed made by nikken. i was after a week more relaxed, the nerve pain was controlable with ibuprohen 1x or 2x / months. the feet did not swell up so much and i think my organs are happier too. i guess i keep telling myself it sometimes better to feel a little pain then to be totally numb. i used to not feel my legs and trunk, and i still don't understand how i kept walking with a walker. i guess the good old brain won over the patchy nerve distruction and found a detour? Don't be scared, what we can learn out of this will make us stronger and better people in the long run.
Hi springmang, you have a great question: How can you jog with drop foot? Well, let me first disclose this. I was training for a marathon, as I am an avid runner, prior to my first round with CIDP. With in two weeks, I was using a walker and the hospital came and talked with me about putting me on a ventilator. Although my legs had been extremely strong and my cariovascular system had allowed me to run for literally hours prior to that first attack, I still could not keep myself up without a walker at this point and the hospital had issues with my breathing and heart functions of all things. After a month or two of hospitalization and a stay at a rehabilitation hospital, I gave joggin a try. Why not? I knew that, if I could do it, I'd look pretty stupid but I just wanted to try so bad, I didn't care if someone saw me. I had to give it a shot. Keep in mind that runners actually enjoy running. It is not work, but rather, fun in a morbid kind of way. Anyway, on my first try, I was able to jog down my driveway, even with drop foot in both ankles. I merely raised my knees a little higher. With drop foot, for anyone who is not familiar with it, the toes of one's shoes tend to point downward every time you raise your feet. Essentially, one walks toe to heel instead of heel to toe. By raising my knees a little higher than normal, I was able to slow jog down the drive way. My driveway is short and I'm sure it wasn't pretty, but I learned something very powerful that day: By jogging down my driveway, I proved that I could jog! All I had to do at that point was to enhance the numbers if I wanted to take up running again. With continued practice, I went just a little farther each time. I even got faster. Now, six months later I had to start all over again because of another attack. But, that's CIDP. I took up jogging again. This time, I was able to build myself up to run a half marathon before my next round of CIDP, which was around 10 months after the prior round. I haven't had that type of success since, however, I did jog 7 miles a month ago. It's a slow way to run, but it's running. I've had countless rounds of plasmapheresis, IVIG infusion, and immunosupresant therapy. I've made some sort of come back every single year after losing the prednisone weight. Sure, much of what I have done is luck. Absolutely. Had I not been a runner to begin with, my experience would have been worse. I could have even come home from the hospital in a box, so I don't want to play down CIDP in any way. But to get to a point, having been a runner, I just couldn't visulalize myself NOT being a runner. The Lexington Herald Leader, in Lexington KY, is doing a story on this that will be coming out on either the 5th or 6th of September in the Health and Wellness section, although neither is my forte. lol. If you think about it, look it up online when it comes out. As I won't see the story until you do, I'm hoping I didn't say anything really dumb to the reporter. OOH, and there will also be some photos of my handsome self. lol. Seriously though, although the newspaper will likely not say this, you and I know that, at some point, I'll have to give this up. We all get a little worse each year and have residual issues that keep mounting up. It's even likely that I'll give it up before the year is out due to the level of pain and the extreme fatique, dizziness, ect. Plus. it's getting harder to keep the knees up. But sometimes we find ourselves doing the impossible somehow. I don't know exactly how, but we do. If you think about it, don't all of us do it? Don't we all do things that ourselves and others never dreamed we could do? My successes are no different than everyone elses, just different.
quick question, i was told by a great pt doc, that i should not overdo excersise, to keep the focus of energy on heeling the nerves. he said anything that makes me tired for more than 1 hour after excersise is counter productive and will make me go backwards. i do a lot of range of motion excersise, but still dreaming of walking without a walker ..... whats your take on that?
JB said:
Hi springmang, you have a great question: How can you jog with drop foot? Well, let me first disclose this. I was training for a marathon, as I am an avid runner, prior to my first round with CIDP. With in two weeks, I was using a walker and the hospital came and talked with me about putting me on a ventilator. Although my legs had been extremely strong and my cariovascular system had allowed me to run for literally hours prior to that first attack, I still could not keep myself up without a walker at this point and the hospital had issues with my breathing and heart functions of all things. After a month or two of hospitalization and a stay at a rehabilitation hospital, I gave joggin a try. Why not? I knew that, if I could do it, I'd look pretty stupid but I just wanted to try so bad, I didn't care if someone saw me. I had to give it a shot. Keep in mind that runners actually enjoy running. It is not work, but rather, fun in a morbid kind of way. Anyway, on my first try, I was able to jog down my driveway, even with drop foot in both ankles. I merely raised my knees a little higher. With drop foot, for anyone who is not familiar with it, the toes of one's shoes tend to point downward every time you raise your feet. Essentially, one walks toe to heel instead of heel to toe. By raising my knees a little higher than normal, I was able to slow jog down the drive way. My driveway is short and I'm sure it wasn't pretty, but I learned something very powerful that day: By jogging down my driveway, I proved that I could jog! All I had to do at that point was to enhance the numbers if I wanted to take up running again. With continued practice, I went just a little farther each time. I even got faster. Now, six months later I had to start all over again because of another attack. But, that's CIDP. I took up jogging again. This time, I was able to build myself up to run a half marathon before my next round of CIDP, which was around 10 months after the prior round. I haven't had that type of success since, however, I did jog 7 miles a month ago. It's a slow way to run, but it's running. I've had countless rounds of plasmapheresis, IVIG infusion, and immunosupresant therapy. I've made some sort of come back every single year after losing prednisone weight. Sure, much of what I have done is luck. Had I not been a runner to begin with, my experience would have been worse. I could have even come home from the hospital in a box, so I don't want to play down CIDP in any way. But to get to a point, having been a runner, I just couldn't visulalize myself NOT being a runner. The Lexington Herald Leader, in Lexington KY, is doing a story on this that will be coming out on either the 5th or 6th of September in the Health and Wellness section, although neither is my forte. lol. If you think about it, look it up online when it comes out. As I won't see the story until you do, I'm hoping I didn't say anything really dumb to the reporter. OOH, and there will also be some photos of my handsome self. lol. Seriously though, although the newspaper will likely not say this, you and I know that, at some point, I'll have to give this up. We all get a little worse each year and have residual issues that keep mounting up. It's even likely that I'll give it up before the year is out due to the level of pain and the extreme fatique, dizziness, ect. Plus. it's getting harder to keep the knees up. But sometimes we find ourselves doing the impossible somehow. I don't know exactly how, but we do. If you think about it, don't all of us do it? Don't we all do things that ourselves and others never dreamed we could do? My successes are no different than everyone elses, just different.
Hi Carli! It's really nice to meet you. You know, the first 2 physical therapists I met would not even have a conversation with me about running again. My first 7 or 8 hospital physicians wouldn't either. However, eventually, I had a physical therapist that did think it was possible. I very much agree with so much of what your physical therapist has said. We have limited energy and we don't reload quickly. What I'm essentially doing is using up the entire days worth of energy in an hour or so. Sometimes it's two days worth of energy or more. I don't work and I live alone. If there were any requirements of me, I couldn't do it for lack of energy. Plus, my level of pain goes way up about two or so hours after running and can stay at that peak for two or more days. The pain has made me cry before, so I don't want you to think that I just kind of innately pull this off. So, I do very much agree regarding the issue of energy. I disagree that this energy should be used for 'nerve repair' or remyelination. Nerve repair can only happen when the proteins elect not to attack the myelin sheath. Now, let's address 'over doing it'. He is sooo right. I hurt myself counless times by doing that. People like us have to be much more aware of that than others. Here is the trick. Increase your exercise in slow increments (sp). Most people get overly motivated. Regular people get sore. Folks like us can pull muscles, etc. and have enormous set backs. Take it slow but be firm that you will take it a bit further the next time. If something begins to hurt, even a little, stop. Just stop. I'm a slow learner and please don't be like me. Since you're using a walker, I started my routines in the bed. You know the leg lifts and the whole routine that goes along with that. If you're still seeing a physical therapist, insist to him/her that you wanted to walk again. There were many times I had to get insistant. I even had to act like I was doing better than I was so that I'd get promoted to the next level. The facilities where I was at had a treadmill which I could be lowered down to. They'd stop me just short of having all my wieght on it, but rather, would put a small percentage of my weight on it. I could put one foot in front of the other. That's when my first come back truly began. If you can see a PT at a rehabilitation hospital, you'd have access to that type of equipment provided you insist on having at least a shot at it. I got my shot after weeks of begging. You know it's a crap shoot. I got pretty lucky. But, you can't get lucky if you don't play the game.
Carli said:
quick question, i was told by a great pt doc, that i should not overdo excersise, to keep the focus of energy on heeling the nerves. he said anything that makes me tired for more than 1 hour after excersise is counter productive and will make me go backwards. i do a lot of range of motion excersise, but still dreaming of walking without a walker ..... whats your take on that?
JB said:Hi springmang, you have a great question: How can you jog with drop foot? Well, let me first disclose this. I was training for a marathon, as I am an avid runner, prior to my first round with CIDP. With in two weeks, I was using a walker and the hospital came and talked with me about putting me on a ventilator. Although my legs had been extremely strong and my cariovascular system had allowed me to run for literally hours prior to that first attack, I still could not keep myself up without a walker at this point and the hospital had issues with my breathing and heart functions of all things. After a month or two of hospitalization and a stay at a rehabilitation hospital, I gave joggin a try. Why not? I knew that, if I could do it, I'd look pretty stupid but I just wanted to try so bad, I didn't care if someone saw me. I had to give it a shot. Keep in mind that runners actually enjoy running. It is not work, but rather, fun in a morbid kind of way. Anyway, on my first try, I was able to jog down my driveway, even with drop foot in both ankles. I merely raised my knees a little higher. With drop foot, for anyone who is not familiar with it, the toes of one's shoes tend to point downward every time you raise your feet. Essentially, one walks toe to heel instead of heel to toe. By raising my knees a little higher than normal, I was able to slow jog down the drive way. My driveway is short and I'm sure it wasn't pretty, but I learned something very powerful that day: By jogging down my driveway, I proved that I could jog! All I had to do at that point was to enhance the numbers if I wanted to take up running again. With continued practice, I went just a little farther each time. I even got faster. Now, six months later I had to start all over again because of another attack. But, that's CIDP. I took up jogging again. This time, I was able to build myself up to run a half marathon before my next round of CIDP, which was around 10 months after the prior round. I haven't had that type of success since, however, I did jog 7 miles a month ago. It's a slow way to run, but it's running. I've had countless rounds of plasmapheresis, IVIG infusion, and immunosupresant therapy. I've made some sort of come back every single year after losing prednisone weight. Sure, much of what I have done is luck. Had I not been a runner to begin with, my experience would have been worse. I could have even come home from the hospital in a box, so I don't want to play down CIDP in any way. But to get to a point, having been a runner, I just couldn't visulalize myself NOT being a runner. The Lexington Herald Leader, in Lexington KY, is doing a story on this that will be coming out on either the 5th or 6th of September in the Health and Wellness section, although neither is my forte. lol. If you think about it, look it up online when it comes out. As I won't see the story until you do, I'm hoping I didn't say anything really dumb to the reporter. OOH, and there will also be some photos of my handsome self. lol. Seriously though, although the newspaper will likely not say this, you and I know that, at some point, I'll have to give this up. We all get a little worse each year and have residual issues that keep mounting up. It's even likely that I'll give it up before the year is out due to the level of pain and the extreme fatique, dizziness, ect. Plus. it's getting harder to keep the knees up. But sometimes we find ourselves doing the impossible somehow. I don't know exactly how, but we do. If you think about it, don't all of us do it? Don't we all do things that ourselves and others never dreamed we could do? My successes are no different than everyone elses, just different.