Anyone experience Tremors

    • Anonymous
      October 16, 2006 at 7:52 am

      My son has what was once a terrible tremor from his shoulder down his arm and up his neck. It was so bad in order for him to sleep I had to gently hold his arm down as once he fell asleep the tremor stopped then started again as he was waking. Today its very slight and I can only feel it and see it in his writing. Just don’t know what he has and wanted to know if this is part of this terrible disease.


    • Anonymous
      October 16, 2006 at 9:49 am

      Hi colleen, I have intentional tremors, i have tremors in my arm when i want to do something like hold it out or pick up things and when i use it to pour a liquid from a pitcher to a glass. it is more intense when i am fatigued, one of my many signs from my body telling me to rest. my tremors get better with time, between my relapses. take care.:)

    • Anonymous
      October 16, 2006 at 10:53 am

      Hi Colleen, I also have intentional tremors in my hands. They seem to get better after IVIG treatment but after a while they come back. I am having a difficult time writing anything. Usually I just print the letters. My signature has become a challenge. I no longer can touch-type on the keyboard. I used to be pretty fast. Now I have to use just two fingers.

      When I asked my neurologist about the connection to CIDP she couldn’t explain it but she wasn’t surprised that I did have tremors. The oncologist I saw earlier this year tested me for tremors right away by putting a paper towel over my out-stretched hands. Seems like he expected it to be there.

    • Anonymous
      October 16, 2006 at 10:52 pm


      I don’t have external tremors, but I used to get these terrible anxious jittery internal feelings. My doctor- both family and neurologist in Cleveland- told me this was unrelated to CIDP. I have my doubts. The longer I have been on IVIG, the less I have gotten these feelings; however, they return the closer I get to receiving my IVIG. Early on- I used to shake my leg to relieve the tension. It drove my wife crazy!! They put me on Lorazepam- which does help. I never had this anxious feeling prior to CIDP.

      In my own mind, the symptoms are related to CIDP. I don’t think “they” know everything about CIDP; therefore, I believe it is important for us to tell doctors symptoms that we did not have prior to having this syndrome.

      Best of luck to you and my prayers are certainly with your son!

    • Anonymous
      October 17, 2006 at 4:14 pm

      I have also been suffering from intentional tremors in my arms, hands and fingers. I still have some (I can only use one finger on my key-board, but just a few months ago, hitting a “premeditated” key was simply impossible), but after Rituxan treatment the tremors – and other symptoms – have slowly subsided.

      There is undoubtedly a connection between demyelinization – destruction of the “isolation” around the nerves – and intentional tremor, and the fact that your son’s tremors disappeared when he fell asleep seems to indicate that his muscles were all thigtened up and the tremors may be compared to the intention tremor some of us experience when we thighten muscles to make them do something.

      Does this make sense to you? Do your son’s tremors show themselves when he is particularly tense and\or nervous?

      Hope both he and you are able to relax as much as possible – good luck!:) 🙂

    • Anonymous
      October 17, 2006 at 5:53 pm

      Hi, Colleen, yes I have tremors with my CIDP. I have the same as described by [U]peteacher1[/U] above, except mine also come with cold tingling feelings. I call them high frequency shakes. They don’t always show externally. Some times It feels like I just want to jump up and shake my whole body and I feel a throbing throughout.

      I guess this just part of it!

    • Anonymous
      October 17, 2006 at 6:40 pm

      I feel the same thing, sometimes it is visable ( like my head shaking) sometimes it is like a bounce when I stand in one place to long, and almost always my hands shake. Sometimes I will ask my husband if he can see me shaking and he can’t but I still feel it inside.

      This has to be the CIDP, because it was like this for me both times. Anyway that’s what I think

    • Anonymous
      October 18, 2006 at 3:59 am

      Norb and Allaug.
      Intentional tremors are a characteristic of your anti-MAG PDN/associated with CIDP.
      I quote from my website. IgM, IgG and IgA page! “There is often numbness, tingling, muscle weakness, [B][/B], ataxia (loss of control of bodily movements including imbalance) and unsteady gait amongst anti-MAG IgM PDN sufferers.” :rolleyes:

    • Anonymous
      October 18, 2006 at 4:02 am

      Somehow the words [B]”upper limb tremor”[/B] went missing from that quote. My error in the editing! Brain tremor?;)

    • Anonymous
      October 18, 2006 at 6:54 am

      Yes, Ken of course you are right, but demyelinization occurs in both PDN and CIDP, and now, after my myelin has had a chance to regrow, the tremors are fewer and lighter. Perhaps the demyelinization of certain nerves causes intentional tremors, and perhaps PDN tends to demyelinize these nerves more often than the typical CIDP. There seem to be so many slightly different variations of this disease, however, that it would not be unthinkable that intentional tremor might occur in CIDP-patients too, like Cheryl describes above.

    • Anonymous
      October 18, 2006 at 1:38 pm

      It may well be so that some CIDP sufferers experience tremor. Depending on the extent of the demyelinisation but then I always recall 2 quite expert neurologists, who really know about this family of disorders, say on different occasions that there is often inadequate diagnosis. Some CIDP cases not sufficiently tested. Prof Hughes says that all suspected CIDP should have serum electropheresis checking for paraprotein.

      If several CIDP sufferers experience tremor then that is a more expert understanding than that of some neurolgists!

    • Anonymous
      October 21, 2006 at 7:42 am

      I am just bringing this to the top for Amatrine…
      I did experience morre tremors when I was on steroids, especially in my arms & hands. Now I just get them when my arms are not resting on something & I have to hold them out. It is just something I live with every day & don’t think about.

    • Anonymous
      November 14, 2006 at 11:29 pm

      [QUOTE=Mechelle]I feel the same thing, sometimes it is visable ( like my head shaking) sometimes it is like a bounce when I stand in one place to long, and almost always my hands shake. Sometimes I will ask my husband if he can see me shaking and he can’t but I still feel it inside.

      This has to be the CIDP, because it was like this for me both times. Anyway that’s what I think[/QUOTE]


      I just saw this message and wanted to comment about feeling like you are shaking, but your husband cannot see it. I sometimes feel like the the floor is shaking my feet, but my son says there is no movement. It must be an internal thing fooling the nerves.


    • Anonymous
      November 15, 2006 at 12:04 am

      When I first come to this forum I asked about the anxious jittery internal feelings I was feeling but I could not find the right words to call them. I some times feel a quiver like a chill or when you have a fever. But I always check and covering up with a quilt does not stop them. I had seen someone call it vibrating and that is as close to what they feel like. When I have my cell phone on vibrate and I am vibrating I can not feel the phone. The vibrating is very distracting and can be started with noice like the noise of some cars or motor cycles going up the street. I am indoors and get this vibrating. I could hear my kids truck leave the stop sign down the street with his glass packs that were not loud at that point but I could predict when he would come around the corner and up the street. I knew it was him before the dogs went to the door! LOL

      I still vibrate when someone touchs me that muscle will just vibrate. Or my back when someone is rubbing it. I used to vibrate when I would walk and move my larger muscles, but that would finally go away. It was so bad that when the vibrations would come up my legs and up my arms and meet somewhere in the middle of my body I would be OVERWHELMED! I would have to stop and just stand there till they stopped.

      I also would ask my Husband if he could see them. He would say No, but if he would quickly stop rubbing my back and feel for the vibrations he could feel them.

      When they were at their worst the dogs would stay away from me! It was like a dog that can detect a seizure. They would just back off and stare at me till I said something to bring them back! Or I would stop vibrating. Weird huh?

      So it has to be something that is with the GBS that I have! Also with the CIDP that others have. Wonder why that Doctor said it was not? Another case of it being rare and very little wrote about it.

      Good thread! Take care everyone!

    • Anonymous
      November 17, 2006 at 5:24 am

      Great thread.

      I now have tremors constantly throughout the day, particularly in my hands.

      Additionally, I have constant fasiculations (visually twitching muscles) and fibrillations (twitching denervated muscles).

      Even though I have ivig every two weeks, the tremors and twitching have increased.



    • Anonymous
      November 17, 2006 at 6:02 am

      I have had tremors in my hands for a very long time. It is especially so when I am fatigued. Neuro has me taking Mysoline 50 mg twice a day and this has helped me.


    • Anonymous
      November 23, 2006 at 10:01 pm

      My fiance Ben has tremors and shakes. He’s currently taking 325 mgs. of Quinine/day which seems to help. He had a very severe case of GBS in February 2005. We’ve seen two neuros about this, and neither of them seemed to want to believe the problem was related to the GBS (although one finally gave in after a few days of watching Ben shake uncontrollably for no apparent reason). The Quinine was actually prescribed by Ben’s pain management doctor since he was the only doctor who believed us when we told them Ben was having GBS residuals.


    • Anonymous
      November 24, 2006 at 1:37 pm

      [QUOTE=Shannon] We’ve seen two neuros about this, and neither of them seemed to want to believe the problem was related [/QUOTE]

      My neuro didn’t think tremors were unusual but could not offer an explanation. The oncologist I saw earlier this year actually expected to see tremors when he put a paper towel on my stretched-out hands to check for it.

      I didn’t know QUININE was available other than in tonic water. Doesn’t it have side effects?

    • Anonymous
      November 24, 2006 at 2:16 pm

      I had been looking out for any more comments from Colleen and her son’s tremor experience. At the time my initial reaction was that the tremor was/is a sign of sensory nerve damage.
      I chanced on an article from an 8 year old edition of the GBSFI newsletter. By Angelika F. Hahn, MD of London, Ontario, Canada on ‘Established Therapy of CIDP’ it included:
      “At presentation, proximal and distal weakness predominate, but objective sensory loss with gait ataxia and impaired dexterity also contribute significantly to the disability. In rare instances (<5%), the clinical presentation is purely sensory. Such patients have prominent sensory signs, gait ataxia, and often large amplitude action tremors but no weakness."

      I don't know from memory how much Colleen's son's CIDP is sensory.

      I guess that the above quote may apply also to Norb and Allaug as their anti-MAG PDN relation of CIDP is strongly sensory.:)

    • Anonymous
      November 26, 2006 at 3:24 am

      I suffer with tremours through the day and have tremors and fits at night and i am unfortunate that Haemoglobulin treatment does not work for me so it is in the lap of the gods according to my specialist i am on lots of medication for diffrent symptoms which also can cause tremours ,so it is worth discussing any tablets you are on with your GP to see if any of the side effects from the tablets are causing further episods of tremours .

    • July 4, 2007 at 3:57 pm

      I was diagnosed in 1998. Not sure when the tremors started, but they were very severe. Still have them, but not nearly as bad. Seems like they travel throughout my whole body. I take baclafin to help control them.

    • Anonymous
      July 4, 2007 at 6:31 pm

      Hi Everyone,

      I also have tremors in my hands. The more fatigued or excited I am the worse they are. My nuero does not understand why I have such bad tremors, it is not med. related and I assume it is just a residual I am left with. She recently put me on an antisiezure med to help treat them, it is to soon to notice much of a difference yet.

      Take Care,


    • Anonymous
      July 5, 2007 at 7:43 pm

      hi guys,

      my first post here. i ahve been battling cidp since 1988. i am 50yrs old. i began having tremors primarily in my hands about 1 year ago. my nuero was not that suprised. nuero put me on “primidone” 50mg once daily. after about 2 weeks the side effects disappeared and the tremors became 80 – 90 percent under control.