Went to Neuro yesterday…

    • Anonymous
      February 23, 2007 at 12:49 pm

      I had Ivig last Wednesday. It was my first of 4 monthly boosters. I have had it three times prior but for five days in a row. Two EMG’s. The second one showing some things worse and maybe two things better.
      After the physical exam yesterday, he told me I am about the same that i was in Dec. (my last exam). He said “plus or minus”. Where there may be improvement on two toes on one side, the other side is a bit worse.
      When he did the pin poke, it drew blood….it was an accident but glad I didnt feel it. If I did, it didnt hurt. I dont feel most of the pin pricks or the vibration thing. Is that pretty much the norm ?

      After the IVig, I had bad aches that radiated both legs and feet. Felt super worn out and the next day felt great with energy. While I never had pains before, I do have spontaneous pain that doesnt last and travels different areas in my legs and feet. Is this typical ?
      I’m back to feeling tired again but ok overall.

      I have a mild case of CIDP. The dr said yesterday we will do three more Ivig treatments, once per mo and then another EMG. (this will be the 3rd EMG since Nov) He said if there is no change, we will try other treatment options.
      He told me he didnt know if I would get better or if I will get worse.
      I asked if I could stop treatment…since things have been super slow to change, I wondered what would happen….he said he didnt know what would happen if I dont do treatment but at this point doesnt recommend it.

      should I be having any other blood tests repeated ? Just curious about that and thinking that EMG’s are the true way of testing for improvements or worsening.

      I am weaker in the arms and legs but still walking quite well…still working full time.
      Still very busy.

      I have alot of stress with illness of my mother and oldest sister but that is for another day. Waiting for test results before I vent too much about them.

      thanks all for listening once again and all feedback is appreciated !

    • Anonymous
      February 23, 2007 at 3:59 pm

      Compaired to what I read here I must have a mild case of CIDP as well. IVIG does the trick for me, once every eight weeks. I get tired the last week before my next infusion but I consider myself blessed. Don’t be too quick to give up on it.
      My doc doesn’t do pin ***** and I haven’t had any tests since the diagnosis. He just does simple tests to check the strength in my arms and legs. Good luck and stay in touch!

    • Anonymous
      February 23, 2007 at 4:50 pm

      I agree that the first day (or two) after IVIG I am spent, but after that I get stronger and have more energy each day. Before treatment were you experiencing weakness in arms and/or legs? I was so bad I needed my husband’s help to get in and out of the bathroom and I couldn’t lift anything. I fell quite a bit (breaking my ankle in the process), so I personally won’t stop IVIG treatment until I feel sure I am in full remission (if there is such a thing!). My neuro says that because I respond so well to IVIG that she thinks I may only have to treat with it for a year or so. I’m playing it one treatment at a time and not counting on it – although I am hoping! I also agree that compared to what I have read here, I am fortunate that my case is rather mild and I have a GREAT neuro! We’re trying to cut down the number of infusion days and stretching days in between to see how I do. If you can function well on only one treatment each month, go for it!! That’s my goal right now. Good luck and good health!

    • Anonymous
      February 23, 2007 at 7:03 pm

      Hi all…

      I KNOW that I have a mild case… By the time I was diagnosed and thinking about which treatment I wanted to try, I began to notice that I was getting stronger… My neuro has just done those simple tests too and he says that I am stronger We built on an addtion with one set of 6 steps and 2 sets of 8 steps to get upstairs…I could not climb stairs at all when I went to see him but after the diagnosis I began to use “braces” (a rake and a hoe handle) to get myself up the two steps into the house from outside… I have had no treatment at all and he is going to do the EMG and the other test on me the end of March to see what is going on… I still get pins and needles if I use my hands too much (now) and cannot stand for more than a minute (walking is easier) and have the fatigue too…but mostly I have only mild conditions to complain about… Is there anyone else in this situation..???


    • Anonymous
      February 23, 2007 at 8:06 pm

      I always thought that any case where a person needed any treatment was not considered mild. I had a mild case I never lost a full days work because of this except to get my nerve biopsy. I also never needed any treatment just pain medication do to my nerve biopsy which still hurts and the fatigue associated with CIDP. So I am very thankfull it could have been worse.

      The only thing I have to deal with now is that I was told I have Raynaud’s disease which I haven’t been treated for yet.


    • Anonymous
      February 24, 2007 at 1:40 am

      It makes sense that ” a mild case wouldnt need treatment”. I guess I say mild b/c I am reading about many others here that are so worse off.

      I have to say that yes, I was weak and numb before the treatment. I honestly cant say that I feel anything is any better. I dont need assistance getting up the stairs or out of a car…up the stairs is hard some days and impossible to carry my son up them if I dont lean my body against the wall. He is 40 lbs. 4 yrs old. I need help opening jars and twisting off most lids, or even squeezing the clamp thing you use for a chip clip. I have never needed assistance with getting up. I do need my husbands arm if we are walking far…mostly for balance b/c I feel like I’m going to fall after a while. I have slight foot drop on the left foot. And I am slow. I used to think it was b/c I am a foot shorter than him and his legs go faster b/c they are longer. Not exactly the problem.

      My husband can squeeze most of my toes or even dig his nail into them as he pinches…on the bottom of the toe…and I cant feel it. I cant make a complete circle with my feet and cant spread my toes at all. I can curl them usually…all but one. With concentration. I orginally noticed it all on the left and now it’s without a doubt on the right. And, that’s been within maybe the last two months. It showed on the EMG more than I actually noticed it.

      My nuero has told me that based on the exam and the EMG’s, he is suprised at how well I walk.

      He always does the pin test, the vibrating test…sometimes uses a cotton ball…he will move my toes up and down and ask if I can tell he is doing it. He will watch me walk barefoot. He asks me to walk on my heels…and I cannot do that at all. He has me close my eyes with my arms reached out and feet together.
      He keeps asking me about problems with my face or double vision. I hope that’s not something he is expecting ?
      I have a twitch in one eye every day. I told him that but he didnt get concerned.
      With me not feeling the pin or some of the vibrating…or even my husbands pinch…is that what is considered sensory loss ? I also lack the feeling in my shins on certain spots. What exactly is motor loss and sensory loss and how do I know if I have one or both ?

      So, no more blood tests are standard then ? And I do NOT want another spinal tap. I cried out loud with instant tears at the first attempt. Then the dr stopped…my poor mother was watching in horror as I cried like a baby with big tears. They ended up having a radiologist do it with fluroguide.

      suppose to get 10 inches of snow here tomorrow. I’m taking my son to the circus in the early afternoon. Looking forward to something fun.

      thanks all for your help and advice. I’m very glad to have someone to share with that can really understand. HOW do we get our spouses to realize this stuff ? I have a great hubby. I just wish I could make him understand it.

      sorry for rambling.
      peace to all.

    • Anonymous
      February 28, 2007 at 11:18 am

      Hey Connorzmom ~ there is no way to “make someone understand”. They only learn “something” by observing you. The only point of reference which my husband has is remembering when he had rheumatic fever as a teenager. The weight of the bedsheet hurt his legs and for 24 hrs. he couldn’t even crawl to the bathroom. Thankfully, 45 years later he still remembers and is compassionate. It’s a very hard job being a spouse/caregiver! It was easy to promise “in sickness and in health” when we didn’t “understand” what that could mean. . .

    • Anonymous
      February 28, 2007 at 1:35 pm

      I agree with Judi Z — there’s no way to make people understand cidp. I don’t “look” sick so how can I have this serious disease — it’s frustrating but keep plugging along — eventually the people that most matter to you will begin to understand. 🙂

    • Anonymous
      February 28, 2007 at 5:41 pm

      Hi all!

      Connorzmom mentioned “Double vision”. Can anybody please explain that a little more in detail? As I write this I’m experiencing something that possibly could fit that description and in short I have trouble focusing, even with my “best” glasses on my nose. It’s such a strange thing, it’s like being dizzy, but without the “carousel”, if you know what I mean.

    • Anonymous
      February 28, 2007 at 7:47 pm

      I think that I would ask to have the IVIG closer together. If you are experiencing pain/numbness before an infusion then you are waiting too long in between them.

      One of the neuro’s that I took Emily to would do the vibration test, have her walk on her heels & toes, and would rub the bottom of her feet with then end of the Q-tip thingy for testing for strep. Her current neuro doesn’t do that. He will check her reflexes, have her walk on her heels & jump on each foot.

      You should probably getting blood tests once a month to check your CBC’s, kidney function, etc. That’s what our home care recommends for people getting IVIG.

      Emily will get tired about 30 minutes into her infusion & it will last for about an hour. After that she is usually fine. We’re lucky that she is a great responder to it (knock on wood!). I personally think she’s tired from the Benadryl.

      You need treatment as long as you are progressing. You can’t heal until the progression has stopped. I wouldn’t recommend completely going off of a treatment. You NEED something.

      There are other drugs available to treat CIDP such as Methotrexate, Imuran & Cellcept. There are more side effects with them than with IVIG but they do work well for some people either alone or in conjunction with IVIG. Some people have success with Prednisone or other steroids. Emily did not respond to oral Prednisone at all.

      Good luck.