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  • #4552

    herself
    Member

    Has anyone had problems swallowing? The end of Dec. I had a flair up where my right leg went totally useless on me, I had to use my arms to move it. At this time I had times where I would take a drink or try to swallow a bit of food and it didn’t want to go down. Almost like it was stuck and after a few painful minutes it was back to normal.I had thought maybe it had something to do with the fact that my stomach is fried from all the meds but the neuro said no. He gave me a couple days of the IVIg and the leg is better but the problems with the swallowing occurs every so often.
    I go back to the doc on the 9th to do a follow up after the treatment but wanted a little input on the subject. Thanks!

    #37237

    Jfitzen
    Member

    Yes, Post GBS I have had some problems swallowing. Not as pronounced as yours. By the Way I agree it is never to late to have a happy childhood. I am often ask when I am going to grow up and having fun at it.

    #37244

    Judi Z
    Member

    I, too, have trouble with swallowing at times. A few times I have chosen to eat only soup or yogurt when I am alone at home. I very much dislike it when a bite of sandwich suddenly escapes my mouth and heads south! Usually my vocals cords aren’t working also and my voice is difficult to project/hear. The days I get a “good laugh” is when the muscles around my mouth are sloppy and I try to take a drink. Just last week I leaned over the sink as the water ran out both sides of my mouth ~ usually it is just the right side.

    That is a great time to “play like a kid again” :D

    Oh, and lots of times I “feel like” there is something stuck in my throat and I will “clear it” or cough for several minutes. Then, it feels like something relaxes and I’m OK. These residuals are something else :eek:

    #37268

    hi herself, yeap the swallowing problem is annoying. i have learned to keep large glasses of water handy at all times. and i can’t eat pretzel rods anymore-big choking hazzard for me.:( when my tongue is more numb then not, i know i will have swallowing problems with almost everything i eat, except ice cream! :)

    #37295

    herself
    Member

    How nice to know it’s not just me being difficult again,lol. All the new and exciting things that go along with the disease. I found the childhood statement on a magnet and thought it was so me. Gotta try and live each day like everything is new. Got my airline ticket to fly to Nevada in May to see my son and going to play for ten whole days!!!

    #37303

    Kazza
    Member

    Hi

    I also, have problems with swallowing sometimes. When the swallowing probs’ ‘play up’ it seems to be with the first couple of attempts at trying to swallow food or drink. And I always have to sip liquid during meals. For me, it’s often associated with being fatigued from over doing things – and a sure sign to rest up. Does anyone else have probs’ with chewing food. My jaw aches and weakens after chewing food so I always avoid food thats hard to chew – Luckily, chocolate – my favourite – is no problem when slightly melted!

    Besh wishes
    Kazza (CIDP)

    #37329

    herself
    Member

    Kazza,
    Did the problem swallowing come before or after the problem with chewing? So far my jaw is fine, I have had a droopy right eye though. Alot of things I ignore, I guess alittle bit of denial but when it comes to eatting that’s serious stuff. There’s always ice cream and chocolate.

    #37356

    tschlenz
    Member

    Hi,
    Im new to all this so I’m intrigued by all the info and more than a little scared about what I’m learning about how varied this disease is. I also have either lewis-sumner (MADSAM) or MMN for about a year. Docs are still debating. I don’t have any swallowing problems but I do have a weak eye and some strange sensations (hard to describe) in my left face. How long have you had CIDP? Are your treatments working?

    Cheers,
    Terry

    #37423

    Kazza
    Member

    Hi,
    It’s taken a while trying to remember which problem came first as I have had CIDP for a few years now (Though, was only diagnosed last year). My swallowing weakness came after my chewing weakness. I have the chewing difficulty quite frequently but the swallowing prob’s are infrequent and are usually as a result of me overdoing things.
    The nerves that innervate my face, etc weaken quickly – just like the nerves in my legs which are also affected. It’s always the same old problems that come and go since my first attack – which I suppose is better than new things popping up! At least I know how to deal with them and not freak out.
    I’ve been told that IVIG will help.
    Best Wishes
    Kaza

    #37439

    herself
    Member

    I’ve been dx with the CIDP going on 5 years now, the lewis sumner part means it started on one leg first then continued on. Haven’t had any remission, the treatments have slowed it down quite a bit though. I keep track of all your opininions on the different treatments but try not to go looking for all the different symptoms, it can get too flustrating even if we’re all so different. It’s really nice to know if I do have something new and strange going on with my body that all of you are right there. Thanks for your input!
    Tomorrow’s my dr appt and I’m going in a little more clear headed.

    #37454

    KEDASO
    Member

    Hi “herself”,
    I too have Lewis-Summer variant. The CIDP hit my autonomic system, and hit the swallowing/digestive process. They did that “Swallow Test” where I ate and drank different substances and watched it on the flouroscope where the food would go down then back up to where the windpipe is.
    My neuro. is trying a pill, “Mestinon” on me, of which I have been on it now for about 6 months. It is a pill used for Myesthenia Gravis, but sends impulses to the swallowing process. It does seem to help some, though I must watch what I eat or drink, as I especially choke on liquids.
    Kedaso

    #37526

    herself
    Member

    I’ve noticed that liquids are worse for me also. Your reply came in time for me to take the info with me today to the doc. Thanks alot!

    #38748

    rcatfire1
    Member

    When I have a really bad relapse…paralyzed from the throat down…I will generally have some problems with chewing. Then as it progresses, I will have problems swallowing and then problems with reduced respiratory. However, when I respond to treatment, I literally am back on my feet and have no problems with chewing or swallowing.

    #38772

    herself
    Member

    It’s calmed down alot after my IVIg treatment, thanks everyone for the input.

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