The Language of Polyneuropathy

    • Anonymous
      December 21, 2011 at 5:33 pm

      The Language of Polyneuropathy

      There is a communications breakdown between physician and patient when it comes to describing symptoms and assessing the severity of the symptoms from patient description. The terms ‘strength’ and ‘weakness’ seem to be used by neurologists as they conduct their exams. Legs and arms are pushed, pulled, the patient is asked to move his limbs, lift legs, shoulders, arms and so on, so the physician can see how strong or weak the patient is. It seems like a subjective test to me, but I’ve been assured by neurologists that having nerve impulses to a muscle which allows the muscle to contract, is how their assessment is objective. CIDP patients who have tingling or numbness or lack of coordination who feel ‘weak’ but can still push against the doctor’s hand are not given, in my opinion, an adequate diagnosis.

      To help patients and neurologists to come to a more comprehensive physical assessment, some additional descriptive terms need to be used by the patient and recognized by the doctor.

      [B]Tingling, numbness, in fingers, hands, feet, legs, arms. [/B] The tingling, to me, goes along with a numb feeling that precludes loss of coordination in a finger, hand or limb. It feels like wearing gloves or socks packed with sharp Rice Krispies. It has a crunchy component as well as a sharp, needle-like aspect. Key words for this – Tingling, numb, crunchy, poor coordination, sharp, needle-like pain.

      A good test for this would be to ask a patient to pick up a quarter from the floor or a table or to bend a paperclip or do some other task that requires feeling in the hands.

      The tingling that spreads up the arm or leg seems to be a warning that nerves are losing their myelin sheath and that the weakness a neurologist looks for will follow.

      [B]Dizziness and a lack of spatial awareness: [/B] This is tested by neurologists as they watch patients walk, touch their noses, move eyes to follow fingers and so on. But patients have self-observations that may be left out. Where do you feel dizzy at home? How does the lack of spatial awareness manifest itself? Shower and wash face/hair with eyes closed? Is the dizzy feeling accompanied by weakness in a muscle group?

      [B]Pain[/B]: Pain can be sharp, jabbing sensations anywhere, or more localized aches and cramping pains. The initial phase of GBS and CIDP is often accompanied by severe pains in the lower/upper back that feel like muscles cramping. Later cramping pains in the same areas can signal a recurrence of the neuropathy in arms/legs. Pain is often ignored during exams but should always be part of an exam. Neurologists have to rely on patient feedback for this and may have reasons to discount or ignore pain. Pain is hard to quantify.

      Any other ideas from the forum here? I’d like to put these terms out there and see if they might help neurologists and patients communicate. Please feel free to comment, add to or suggest changes. In the next few weeks, I’ll try to put it all together, and maybe it will help someone.
      Thanks J

    • Anonymous
      December 22, 2011 at 7:07 am

      Thank you. I appreciated your assessment idea of having a patient try picking up a quarter. I have trouble with this when I try to make change in a store–it’s hard to do with numb fingers.

    • Anonymous
      December 23, 2011 at 4:29 pm

      Thanks for the clarification. I still think that Dr.s have trouble with comunication. Maybe they need graphs or data tables. I’m going to begin testing my ability to lift 1, 2 or 5 lb weights and recording that over time. Also noticing my gait becoming more stumbling. How to quantify that?

    • Anonymous
      December 26, 2011 at 2:06 pm

      I’m currently on 40mg prednisone daily and still noticing increasing weakness and extreme numbness in fingers and hands. I’m walking but with weakness upo to thighs and notice the difference on a daily basis. Any suggestions on prednisone dose increase? Does it slow down the demyliation? Or should I try for plasma exchange? Anyone in the forum who might be well informed on this?

      Naturally, this happens on a holiday – so dr.s hard to reach.:p

    • Anonymous
      December 26, 2011 at 4:49 pm

      Hello Took,

      Let me give you some background information and then try to answer your specific questions. While I am doing this from memory, I am pretty sure that I am close to right. I will check and make amendments later.

      When starting with steroids, the first step is often infusions of Solumedrol, with 0.5 g to 1 g infused each day for 5 days. The next step is to start with prednisone or methylprednisone at a dose of between 0.5 to 1 mg/kg body mass every other day for 1 to 3 months. The next step is to reduce the dose until things start to get worse, and then adjust until things are improving or at least at an even keel. There are other protocols. For example, Dr. Gareth Parry at the University of Minnesota uses an even more aggressive approach. Your neurologist can e-mail him for the details.

      The steroids are very strong anti-inflammatory drugs. They are also immunosuppressants. However, the immunosuppression is not as immediate as the anti-inflammation, so it takes a while to notice if it works.
      If your CIDP has a strong inflammatory component, then administering large doses up front should beat down the inflammation and should do so pretty quickly. If your CIDP has a strong antibody attack, steroids might help beat it down as well.

      I think it is unusual to increase prednisone dosages in treating CIDP. Usually, you want a full frontal attack, that is, large doses. Doing so does two things: it helps let the body start healing by reducing the inflammation as much as possible and it helps determine if the treatment is going to be helpful at all.

      Now, as to the specific questions. Steroids can stop demyelination, because they are immunosuppressants. They seem to cause T-cells to die earlier than they would on their own, thus reducing their overall number. The subtlety is that the immune system is so complicated that simply getting some T-cells to die early may not be effective.

      Many doctors worry about using PE because it is considered invasive. And compared to taking some drugs or having an infusion, it is. If you are willing to deal with the invasion, though, it is a treatment worth a try.

      In my case, I started with the steroid protocol I mentioned above. That worked for a month or so, but then became progressively less effective over the next two months. I then tried PE while tapering off the steroids. The PE was very effective, although the time between relapses was quite short. I am reluctant to give advice because the disease course is so different for everybody. Still, I would talk with your doctor about trying a steroid protocol more like what I outlined above and if that does not provide improvement soon, moving on to PE or IVIg. Alternatively, you could switch now to the other protocols. The Peripheral Nerve Society has a set of protocols that is widely, if not universally accepted: ([url][/url].

      Godspeed in finding relief soon,

    • December 26, 2011 at 10:49 pm

      Took–I am not well informed on prednisone, just sharing my experience. Prednisone made me worse, I could feel the weakness increase on my fourth day of taking it. I was on 60 mg of oral prednisone daily.
      Because I wanted to make sure I gave it time, and partly I think because i wanted it to work–I continued taking it, thinking in time things would improve. they did not, i continued to be mentally very active, little sleep, weight loss, got a lot done–but physically I was getting weaker.
      Close to the end of my 2 month trial, a family emergency left me barely able to breath, heart racing and physiically barely able to walk. Shortly after that i called my Dr and started the weaning off process and figured out that prednisone was not going to work for me.
      With this disease it’s hard to determine if im getting weaker BECAUSE of a treatment or getting weaker DESPITE the treatment.

    • December 26, 2011 at 11:01 pm

      [QUOTE=Took]Thanks for the clarification. I still think that Dr.s have trouble with comunication. Maybe they need graphs or data tables. I’m going to begin testing my ability to lift 1, 2 or 5 lb weights and recording that over time. Also noticing my gait becoming more stumbling. How to quantify that?[/QUOTE]

      I find weights/dumbells to be a very affective way to measure my strength. It used to be prior to cidp I changed up my weights/exercise routine to gain affect, Now I keep it pretty basic and the same to maintain strength and to assure myself im not losing strength.
      If anything it gives me a piece of mind—its easy to confuse fatigue with strength loss. If i’m in doubt i go down to the weights and assure i can still do the same amount of reps with the same weight.
      Sounds anal, i know, but it does help me and it’s a “measureable ” way to assure you’re on the right track.

    • Anonymous
      December 29, 2011 at 1:50 pm

      Your responses have been very helpful. I will pass on this info to my neurologist. Symptoms seem to be progressing slowly but mostly ‘parasthesia’ (a better way to say numb) makes my hands and feet feel wooden. I have trouble picking up small things and notice weakness more when climbing stairs, picking up moderately heavy objects. I’m also noticing a shrinkage of muscle tissue in hands and arms. Having some difficulty making thumb and fingers touch one after the other and the ability to open something as simple as a pepperment candy in a wrapper needs teeth to tear. A month ago I was able to put 100 lb blocks of wood in the back of my pickup. Not happening now.

      I really appreciate the input from those of you who have had this experience, have had the same fears and frustrations and are still being positive about the whole thing. It really helps. You are inspirational.

    • Anonymous
      December 30, 2011 at 10:25 am

      I must say I agree with your initial statement of communication stumbles with our neuros. I also think their tests seem minimal. I was an aerobics instructor for 22years and I know muscles have memory. I think sometimes when my muscles are being testing for that “second of time” they know what to do and do it, whereas if I had to latch onto something and hold or press for a longer time, I would weaken quickly. If you come up with something in writing for neuros, please post it and maybe some of us will pass it on to our docs for the benefit of future CIDPers.
      I am going to be going to Northwestern Univ in Chicago for a stem cell transplant in March and hope to kick CIDP to the curb once and for all! IVIg and steroids are not what I want to be doing the rest of my life!!
      Wendy ๐Ÿ™‚

    • Anonymous
      December 30, 2011 at 10:31 am

      I just private messaged you, look to top right to find it. ttyl

    • Anonymous
      January 3, 2012 at 10:05 am

      Wendy. I wish you the best with stem cell therapy – Keep us posted as to its efficacy. It would be good to lose CIDP totally ๐Ÿ˜€

    • Anonymous
      February 11, 2012 at 4:49 pm

      I am obviously late to the discussion, but…. I wish the Docs could understand how much I have lost from MY starting point. As a Golf Professional I have hit a lot of golf shots and have (had) very strong hands / forearms. Whenever the doc asked to squeeze my hands, I said “how hard”. Not being snotty, but I could probably have broken bones in someone’s hands at one time. I have lost 50-60% of my hand strength, but I still have a grip equal to most. My loss is measurable, but to him, I still have strength….. Now, If I was hooked up to a measuring device that measured the amount of “work” done, it could be quantified.
      I do understand the push against me this way and that, because they test different muscle areas each time. If it is the same exercise in one group only, the measurement may not be across the spectrum instead of one group.
      I too wish those tests were less subjective, but all medicine is not objective.
      By the way, I tried to describe my numbness as “It feels like I have on two pair of pants and two pair of socks. I can still feel stuff, just less of it.” He looked at me like I was crazy. Then about 10 years later I see “stocking-glove” as a diagnostic complaint… Go figure.

      Dick S

    • February 11, 2012 at 8:49 pm

      Dick S- I couldn’t describe the numbness better!! I am the same way.. it feels like I have thick socks on – though they are all the way up to my face!!! ๐Ÿ™‚ I guess since It shows up on the neuros exams each time (not on the NCV at all, but their pin prick, vibration and cold/hot) they seem to understand. when they ask me if my toe is up or down, I looked at them since I didn’t think it was up OR down! I thought it was in it’s normal neutral position! .. this stuff is crazy!!! Are all of yalls reflexes diminished? I’ve always had brisk reflexes (i’m a thin female, which apparently they say has something to do with it).. and they are still normal/brisk, but apparently my arms are diminished and sometimes unattainable.. though I sware that varies from Dr to Dr SOOO much.. I could never be a neurologist.. too much subjectivity!

    • February 12, 2012 at 3:47 pm

      I used to explain the feeling to my Dr. that it felt as though someone dipped my feet lower legs in cement and its dried on there. But…. yet if i bang my foot, step on something,or most common–my 100 pound dog steps on my foot, I can feel every bit of the pain, almost more so than before cidp.
      It’s real hard for people to understand how I have numbness but yet feel everything at the same time?? That is interesting that you mentioned above that cidp is more common in thinner people, I have never heard that. Just last night I was reading an article on neuropathy and it commented that tall people often suffered from it more. I’m thinking because of the extra distance from the heart–circulation?? the article didnt get into the reason for it.
      I remember my first “up and down toe test” about halfway through I just couldnt help it—i started laughing and told the Dr. “this is really useless, because i really don’t know if my toe is up or it’s just a guessing game with a 50/50 chance of being right” he agreed and didnt bother do anymore. But now 3 years later I CAN feel whether my toe is being moved up or down, so it gives them something measureable i guess.

    • February 13, 2012 at 9:17 pm

      Lori- I agree! I can feel everything, and sometimes more senstive, but can’t feel things all at the same time .. haha we have a 170lb dog!!! and I have a broken toe from running into too many things, the door finally got me good!!! I can feel it ok!
      Oh, i meant as far as thin people go that their reflexes are usually more brisk, I don’t know if cidp is more common in thin people , but the tall thing is interesting.. I am 5.10! Do you sometimes not know where your limbs are?? I’ll be holding one of my kids or sitting on the couch etc, and I have no clue where my arms or legs are!?! It was one of my first symptoms.. I thought at the time I must have MS.. but was so busy with kids and work, figured I’d deal with that when it made me deal with it.. haha.. didn’t realize it would result is such a big life change!

    • February 16, 2012 at 2:18 am

      my cidp only affects my feet and calves so it’s more like not knowing if I’m stepping on things. Good thing it doesnt effect my hearing–lol—because i only know im on my cats tail when she yowls.
      yes this is definitely a life change. I was the same way when i first got symptoms of buzzing, muscle twitches, etc. I was a runner and an avid exerciser so I just blamed it on overworking myself until it got to the point i couldnt ignore it anymore. Wish i could still ignore it—-but not as easy now that it effects everything i do.
      Im tall too, just under 5’9

    • Anonymous
      February 18, 2012 at 7:20 pm

      I am 5’8″ (used to be 5’8 1/2″ boo hoo!). I, too, was a runner (marathoner, spin instructor, boot camp aficionado, etc.) I ran the NYC marathon when I was 40; for my 50th I thought it would be a great idea to celebrate with another. I ran the Steamtown Marathon and had a good first half, but miserable (and painful) second half. I was so annoyed with my performance (4:18 time) and got my picture but had the time blacked out. At the time I had no idea of what was coming – nor how proud I should be of that accomplishment.

      The summer before that marathon I had such bad pains in my back and legs that I would run for 2+ hours 6 days a week – just for pain relief. Those runs would give me a few hours of blessed numbness. The next morning – the agony was back – and I returned to the running trails. Throughout that summer I kept dropping things (there are dents all over our wood floor) and then I started falling. I swept them all away, thinking … I am tired, I am in the depths of my training, I have kids, I work, I am going through menopause,etc. Looking back, there were many years of signs that I easily explained away but that now all seem too clear.

      Regarding the “up or down?” toe test – when I began my CIDP/SPS journey, I had no control over my feet or my legs, never mind my toes. Very brisk reflexes (and yes, I am very thin). I did get some control of my body (inc. my feet) back thanks to 18 months of IVIG medicine. The good news is that the numbness has returned which helps to notch down the nerve pain a bit. The bad news: the numbness can be dangerous. A few mornings ago I was in a rush and quickly put on my sneakers Later that night I noticed some throbbing – when I took off my shoes I realized my toe was bent all the way underneath my foot. So swollen and disfigured- a close call but thankfully I didn’t have to have it taken off.

      I experience both numbness – and burning, horrible nerve pain. I have the fasicullations (esp the day after my IVIG infusions), intense cramping and spasms. I have swallowing problems, bladder issues and a really rough time with my procreoception. I also have Stiff Person Syndrome, which complicates the spasms and cramping that we also get the CIDP. It adds a new layer of stiffness, spasms and an overactive startle reaction.

      Ugg! What a mess, huh? Just think of how many sit ups, push ups, miles we, as athletes, ran, the salads we ate (and desserts we skipped). Maybe next time around we have to skip the salads and head right to the chocolate cake!

    • February 19, 2012 at 2:59 am

      wow.. yall sound so similar to me!!! Gosh, I have cravings of going on a nice jog!!! It sounds amazing!! But for now I’ll be thankful i’m walking! Before this whole thing hit me, right after I had my son I was running again, and couldnt’ get the smile off my face! I was SOO happy to have pregnancy (after 4 years of on and off pregnancies/miscarriages and high risk/bed rest etc) behind me and finally able to get my body back get in shape haha.. little did I know my body was about to be REALLY thrown for a loop!

      Patty- SOO nice to hear you had brisk reflexes too!!! I have always had brisk reflexes all my life, my whole family is thin and does too.. Were your emgs/ncv’s , LP’s etc all typical of CIDP??

      Did yall both have back pain around the onset of your CIDP?? Each “relapse” I have had I have had sharp shocking sensations going down my back… very different feeling than anything I have ever felt, a few days later symptoms are worse!

    • June 21, 2017 at 9:03 pm

      sooooo i new have a great new symptom i grabbed ice from freezer could hardly feel it cause was so cold and my hand been burning since..i woke up this morning with lines from each finger going to top of finger tip and fingers are all red..Ive been dealing with since middle of march..Four neurologists later and nerve tests on last one said i have demylineating polyneuropathy.. but mild well since the last few days this is getting worse..Last euro said lets do some more blood and if normal spinal tap..I have nerve pain from toes to legs and now in fingers.. my knee the other day i couldn’t feel or put no weight on it to get up..on top of this I’ve had breathing issues also now a bad cough dry for the last month..I just know this looks like cidp i been reading about it and i have so many symptoms