Question for those with problems walking

    • Anonymous
      July 27, 2008 at 12:04 pm

      Yup, it’s me again with yet another question! Getting tired of me picking your brains yet? 😀

      For those who have problems walking, if they can walk at all, how did the problems start? How long did it take for the problems to get really bad?

      Ever since the tingling spread up to my upper thighs on both legs sometime last week, I’ve had three days where my legs have felt shakey; like they were on the verge of giving out but not quite there yet. The other night, I woke up to use the restroom during the middle of the night and my legs felt like rubbery noodles. I was able to walk but had to lean heavily against the wall of my bedroom as I made my way to the bathroom. In between the days of shakiness, I’ve had a day where my legs feel stronger. Not normal, by any means, but just not as shakey. I discovered my balance was shot when I saw my doctor on the 11th. Oddly enough, I haven’t been tripping over my right foot lately. Of course, now that I’ve said that, that will probably happen sometime today :rolleyes:

      I know CIDP progresses differently in everyone but I’m still just wanting to know what people’s individual experiences in this area are. This is completely new ground for me.

    • Anonymous
      July 27, 2008 at 1:38 pm

      For me it stated around May of 2007 while on vacation. I noticed that I couldn’t walk as far as I used to, and once I got down on my knee, I couldn’t get back up on my own. Shortly after that I went for an exam and had a nerve conduction study. Regular doc sent me to a neurologist and I was diagnosed CIDP in Sept 2007. Since hat time I’ve had IVIG, Prednisone and Plasma Phereses with no improvement. I’ve gone from a cane a few months ago to now a walker and even with that I have a hard time getting around. I’ve since seen a new neurologist at The Hershey Medical Center and he ordered a bunch of tests to see if there is something else going on since I haven’t responded to the 3 treatments that usually help. Hopefully he will come up with a new plan of attack to get this under control.

      So, to answer your question, it’s taken some time to go from unsteady walking to using a cane to a walker.

    • Anonymous
      July 27, 2008 at 3:58 pm

      For me the original tingling/weakness came on over the course of 2 weeks. By the end I could “shuffle” walk but not stand up from a chair due to weakness and the tingling was constant. I was treated with IVIG and then improved to the point of walking with a walker but proceeded to relaspe 5 more times in 8 months with each seeming to come more suddenly. Finally treatment stopped the relaspes and I haven’t had one in 18 mos 😀 So I guess what I am trying to say is each time my symptoms came on at a differnt rate.

    • Anonymous
      July 27, 2008 at 4:13 pm

      For me I noticed “really thought about it” back in November 2007. December I started using a cane. I slowly started tripping over my foot in January (sprained it twice now) by then using crutches. By the end of February- March, I was using a walker. How to explain, my gait looked like I had Polio. If that makes sense. I have borrowed a wheelchair, for when we go out. But I still use the walker for bathroom trips and going to bed. Unfortunately, I can’t walk without it anymore. It took about 5 months for me to lose most of my mobility. Still waiting for treatment…

    • Anonymous
      July 27, 2008 at 6:56 pm

      Although I am completely diagnosed just yet, I thought I would add where mine started. I got a Hepatatis Vaccine because I was working in the medical field back then, and after that vaccine, I started noticing a numbness and tingling sensation at bedtime while trying to sleep. My feet would fall asleep and just would not wake up. Then my left side started going out. From my face to my left leg. Was all numb and tingly like I was having a mini stroke. The nerve damage with me has spread everywhere. I have it in my arms, legs, face, torso. I’m eat up with the mess. I just hope they find something to help me soon. Hard to deal with for me, but I’m trying.
      I too have Systemic Lupus and they are trying to figure out if my CIDP is Lupus involved or not. I think mine is Lupus involved. Just getting some kind of treatment is what I am waiting for and right now, I’m willing to try anything they give me! Will be scared but will try it out and hope it works for the best.

    • Anonymous
      July 28, 2008 at 2:39 am

      When I was first diagnosed in 2000 with CIDP I was using a walker-have to say it was a balance thing too. Through the years I have progressed up to a cane. Depending on my balance, I have a great fold up cane that I keep right by my front door and use it as needed. My friends have encouraged me to use a scooter at the grocery store, etc, but I have always replied that as long as my legs are ok, I am going to keep walking. And there are somedays I either hurt too much or am too tired after my ivig that I just don’t walk outside my home at all. But to honestly answer your question my neuro and I feel that the Prednisone, Neurontin, Imuran, and later, the ivig, have helped me to not progress quicker to being wheel chair bound. Trying to stay as independent as I can. When I do walk, I will tell you, that by the time I return home, the backs of my legs are on fire from the pain. And when you ask any neuro length of time before you’ll be wheel chair bound, he will not give you a direct answe( I tried ), because he really doesn’y know-each of us are so different. Emma

    • Anonymous
      July 28, 2008 at 7:03 am

      My true problems come with distance. I walk around half normal when I dont have far to go. I wear new balance tennis shoes and I swear by them. I have slight drop foot on the left…meaning I cant bring my ankle all the way up when I step and it’s starting on the right. My doctor actually told me he was amazed at how well I walk after doing the first EMG.
      After I go less than say, 1/2 block…my legs get very very tired and difficult to lift, especially my feet. It feels like I am lifting my foot way up just to take a step and also feels like they are noodles and I could fall at any second.

      I use a cane for distance now and that helps….also been using it for uneven ground outside and for the days I’m just tired.

      best wishes,

    • Anonymous
      July 28, 2008 at 7:54 am

      Hi Kithlyara,

      My opinion on the walking and what to expect if things don’t turn around. I have some input that help. First of All, After reading your posts so Far, It appears that you and I share very similar symptoms and diagnostic criteria, best I can tell. I was also told I have a mild case, although I don’t feel it is mild. My system suffered and degraded from June 07 through the end of Fed 08. At my worst, is sounds like where you are at now. I dreaded going up the steps, wobbly at night, rubbery legs, etc. I felt in Feb, that at the rate I was going down hill, it would be 2-5 months and I would be uanble to walk anymore. The changes were slow but got worse each day and noticeable as each week passed. Balance was bad. If I closed my eyes to wash my face and bent over, I would go flying back. At this point I was undiagnosed and was about to see the current neuro that I see now.

      As you have probably read, It does not matter how strong you were before your illness, the situation can disable quickly. I read about bearman, a former football player now unable to go but an hour or two. I was at that level of deteriorations as well. Other factors like body weight play a big role in mobility, the severity of the attack from your system etc. Probably the most important thing is starting the treatments in the correct order to find the one that arrest the attack on your system. If you are waiting for the IVIG approval, staying on Prednisone until that comes in would probably be something I would want to do. Otherwise there is no way of knowing exactly what to expect.

      Although I am currently not being treated, I was fortunate enough, that I was able to cause a bump in my system that got me back on my normal track and since have made huge improvement. this is allowing me time to have some final testing done so that I can start a treatment plan to prevent relapse. If that didn’t happen I don’t where I’d be today. Probably not very good. It is apparent that most people suffer too much until the doctors get the treatments going. It seems they need to see it with their own eyes that you are literally on your last leg before they act. Unreal. Your Doc seems a bit more proactive than most and that is Real Good. Good Luck!!

    • Anonymous
      July 28, 2008 at 2:55 pm

      Hi, Kit.

      Okay, here’s the looong story. I started CIDP in 1999 with a funny feeling in my feet. A few months later I noticed that I couldn’t walk as far as I once could (we’re talking miles here), and a year later that feeling started in my hands. At that point I finally went to my GP who smacked my knees with a hammer and immediately set me up to go to a neurologist.

      By the time I was diagnosed in 2001 I had a lot of foot drop and needed AFOs and a walking stick but I could still walk. IVIg put me back to something close to normal — got rid of the AFOs and the stick — and relapses every six to eight months were sorted with IVIg.

      Then came late 2005. Since then I’ve slowly gone downhill. IVIg no longer works and steroids only make me sick (literally: I lost two kilos in three weeks on the things!). Early 2007 I started using crutches — first only one, but by October I was using two. Two months ago walking became so exhausting that I finally bought a wheelchair (the one I’m now using is a lightweight sporty red and grey model that’s an absolute delight).

      I can still walk but only with crutches and only for short distances, and my legs tend to flop all over the place. The longer I’m on my feet, exponentially the more energy I use — I can roll myself all over the place and not expend much energy, but a short time using my legs seems to use every bit of energy I have.

      My neuro and I are still looking at options, and I hold out hope of improvement. But at the moment I’m very thankful for my wheelchair. Today I took a stroll (or roll, in this case) further than I’ve been able to walk in months. It was a rare sunny, warm day in London, and it was wonderful.

      Keep fighting,


    • Anonymous
      July 29, 2008 at 4:21 pm

      I started with numb, tinglig, needles, pins an pain in both feet to knees in Sept 2007, by Oct was on a walker, by Nov was in a wheelchair part time.
      I’m now back to a walker. I can walk a short distance less than 30 feet in the house without the walker. I walk like a drunken goose that has flippers on. It is very slow going and I tire quickly. Better have somewhere to sit instantly when needed. My walker has a seat. I have a power chair that my husband has to put together to go to a store.

    • Anonymous
      July 29, 2008 at 8:26 pm

      Like Beth, I have CIDP associated with anti-MAG IgM. This variant tends to progress very slowly and is mainly sensory. It started in 2001 with very mild numbness in my toes. It wasn’t until two or three years later when my walking started to be affected. My gait was getting more and more abnormal but I still could walk at a normal speed without any support. In 2005 or so I finally got a cane to be able to walk more normally as much as possible. Symptoms continued to go downhill and last year I had to get a rollator. We actually took it early last year to Thailand and Laos for a two-months stay. Even with a rollator walking now was very tedious and tiring. After our return I had a couple of falls. One time the rollator rolled away from me, I fell and broke my knee. In fall my neurologist suggested I get a power chair because she felt using the rollator was no longer safe. Now I only walk a few steps holding on to whatever I can.

    • Anonymous
      July 29, 2008 at 9:26 pm

      I first noticed symptoms the week after I had a minor surgical procedure, just having to hold on to things and thought I was just weak from the surgery. During the 2nd week my aunt died and I was having to have ppl help me walk around the funeral home, still I was just thinking I was still weak. Then I started falling and couldnt get back up, could not get up and down off of couch or toilet without help.Started using a walker until I kept falling while using it. Six weeks after the surgery I was in a wheelchair.My family had to roll me over in bed, shower me, help me to the bathroom, and dress me. I lost my job and my insurance so never received any treatments. Doctors just thought I was goin to the ER for pain meds. One neurologist diagnosed me with diabetic neuropathy. Finally after 15 months my ob/gyn contacted a medical school friend that is a neurologist that agreed to test me for free and at that time I was diagnosed with CIDP.It has been over 3 years now since onset. I am learning to walk a little on my own because I cant afford pt.I have foot drop in my left foot so I really have to becareful. I started receiving disability 6 months after applying but I had to wait 2 yrs to receive my medicare. I am still not receiving any treatments because I cannot afford to pay the % that medicare doesnt pay. But I am goin to pain management to help with the pain. My body is just having to heal itself. I would say I am about 90% better than I was.

    • Anonymous
      August 1, 2008 at 6:21 pm

      Thanks everyone for your responses! They are all really appreciated. While I know my experience will be different from everyone else, thanks to the nature of CIDP, it does still help tremendously to know what others have experienced.

      Please forgive me for not posting my thanks earlier. I have been seriously wiped out lately. Any sort of walking around early in the day tends to have me exhausted in the afternoon. After a half hour trip to Walmart this morning, my thighs began to feel like they were starting to cramp up on me. It wasn’t anything painful. It was just tight and uncomfortable. Now, my legs feel shakey and weak. The more tired I get the worse the tremors in my hands get, too. In spite of starting to take Provigil again and a nap this afternoon, I’m still beat.