Does anyone else have problems with their voice?

    • Anonymous
      July 30, 2006 at 2:29 pm

      Hi,

      I am wondering if anyone else has problems with their throats or voice. My neurologist said that normally people with cidp do not but it could be a sensory problem. I feel like I have a lump on the left side of my throat and my voice feels tired I don’t know how else to describe it, it feels like I have been yelling. I went to a ear nose and throat doctor. He could not see any problems even after doing a scope to look past my vocal cords.

      Pam K.

    • Anonymous
      July 30, 2006 at 4:15 pm

      Pam ~ you are not alone! There are days, even yet, when I talk in a whisper at moments or my voice will just “disappear”. And when I get overtired, I will often “clear my throat” of the non-existent lump :p I use to be a vocalist but now I can’t count on my vocal cords. The ENT doc didn’t “see” anything because it’s those nerves:eek: I look at it this way ~ when I can’t “speak up” it gives everyone else a break:D

    • Anonymous
      July 31, 2006 at 2:45 am

      Hi, Pam.

      Yep! Problems with my throat and breathing, as it turns out, were my first symptoms, preceding the tingling feet, etc., by four years. I felt as if I had something caught in my throat, had trouble swallowing and taking a deep breath, but all the normal tests for that sort of thing came back negative. The doctors just shrugged and said it was probably the early signs of menopause (I was 39 at the time). It wasn’t until I talked to my neuro about it a couple of years ago that it was determined that the problems were part of the CIDP.

      So now, I constantly clear my throat, my singing voice (which was never good) has dropped from high alto to low baritone (a nice range for a woman), and I find talking for very long is difficult and tiring. Along with the drooling and spitting caused by the non-existent nerve function in my mouth, lips, and tongue, I’m a real treat to hold a conversation with!

      Best wishes in the battle,

      Deb

    • Anonymous
      July 31, 2006 at 7:34 am

      Hi,

      Thanks so much for writing back. It is so helpful to hear what other are experiencing. I have a follow-up appt. today to see the ENT doctor but there is no reason if it is just more CIDP related stuff.

      Pam K

    • Anonymous
      July 31, 2006 at 1:07 pm

      Hi, Pam.

      Although it’s possible that it’s CIDP, it’s also possible that something else is going on. Best to see the doctor and rule out everything else, just to be on the safe side.

      Deb

    • Anonymous
      July 31, 2006 at 4:47 pm

      Yes, fatigue limits the volume possible in my voice, effects swallowing (causes choking on saliva, food or drink in my mouth) and even slight drooling and breathing can be impacted when I’m over fatigued. Supporting the back so that the diaphram is pitched up and out can improve my voice for a meeting but for a short time. I just tell people up front what the deal is, and proceed with my meetings. Rest is the only resolution for me.:(

    • August 6, 2006 at 5:21 am

      I have encountered the same problem! Often my voice drops down so low I can’t even hear myself! I feel as if I had been yelling. I couldn’t understand why and never thought it had to do with CIDP. Oh, what wonderful discoveries! :rolleyes:

      Nancy (Italy)

    • Anonymous
      June 7, 2007 at 9:15 pm

      I find sometimes when I am tired it feels like I am starting a cold. I clear my throat because it sounds terrible like when you talked to much and your throat is over tired and your voice sound rough then I realized I am tired. So now when my voice sounds terrible I ask myself am I tired? and realize I am.
      Never told my DRs. Just noticed it recently that it happens.

      Sue

    • Anonymous
      June 7, 2007 at 9:27 pm

      Very interesting. I dont have CIDP and had GBS in 85, however as I have become older my voice and throat seems to become more ‘taxed’. If I speak loudly for a little while, or the kids shout to find out where I am and I shout back to answer 😮 , then a while later it feels as if I have been yelling and my throat is raw. However, sometimes it doesnt even take that and my throat feels like I’ve been to an athletics meet or something. Sometimes it does feel like i have a lump in there too……
      Sigh! I just rake it up to getting older 😎 which I do most things – but then I really dont think i am that old at all:), still have plenty of miles left!

    • Anonymous
      June 7, 2007 at 11:02 pm

      I had GBS but had the vent float on me twice and then the trache fail and had to have another one put in. I had a terrible cough the whole time I was in the hospital and I always talked with a strained voice. After my lung colasped I found it hard to finish a sentence, I ran out of air. I would choke on my own saliva and at times felt like I was going to pass out from not being able to catch my breath. I even went thru a very long list of words to find out I was not able to say some words. I would try and clear my throat in the hospital and at home but never could make a difference. Now I can say words, sing off tune which I can not blame on the GBS and still cough and choke on my drainage from the back of my throat or sinus. I can feel a thick substance in my vocal cords that will not move like a dryer unusual phlegm. I have mentioned it to every Doctor and finally my GP said to go see another ENT specialist. I hope the scope shows something.

    • Anonymous
      June 8, 2007 at 5:55 am

      Hi Pam,
      I have CIDP and have weakness of some of the cranial nerves that affect my eye movements, chewing, swallowing and talking. I saw a speech therapist who actually identified the areas of weakness – and my Neuro is also aware of this. I don’t have the sensation of a lump in my throat though.
      My voice will fade away and sound more ‘nasal’ if I talk for too long – which doesn’t take very long. I also can’t sing anymore! It actually wears me out! I use to love singing in the car while driving and I also find it extremely difficult to eat a meal and have a discussion with someone – again it wears me out.
      So lets just say I am a good listener these days rather than a good talker!
      Best wishes
      Kazza – A problem shared is a problem halved.

    • Anonymous
      June 8, 2007 at 1:39 pm

      Pam,

      Yes, the voice is a problem for me too. It is especially noticable when I am tired – my voice sounds a little raspy and not as loud. My family and friends notice it, and remind me that I’m tired. It is most noticable on the phone to people who know me well.

      During my GBS active period, one of my vocal chords was paralized, so I couldn’t talk above a low whisper. This lasted for about 3 months and you can’t imagine how frustrating it was! I finally got a small megaphone (one with batteries) to amplify my voice – it makes me laugh to think about it, because everyone teased me about it.

      One day my voice finally spontaneously came back to normal.

      So yes, GBS can effect your voice and your vocal chords.

      Suzanne

    • Anonymous
      June 21, 2007 at 11:53 pm

      it still baffles me to find out that things are gbs or mf related. i find when im not on anti-depressants my voice is much louder and harder to control. people tell me im yelling on the phone and if you are in the same room while im on the phone you cant hear anything else but me. ive always had a very raspy voice and teachers would always think i had been sick till they got used to my voice but it really carries now. it seems if i get off of an antidepressant or my dosage is lowered tremendously it tends to affect it. strange. barbara:confused:

    • Anonymous
      June 23, 2007 at 12:56 am

      Hi Pam,

      I hope things went well at your Dr.’s appointment. I also have problems with my voice. Sometimes it sounds like it is quiverring kind of like I am straining to talk. I always thougt mine was a residual of having a trache for so long, but it is interesting to see so many others have problems with it as well. I never even thought that it might be related to my CIDP. My quiverring voice gets worse with stress and excitement.

      Hi Everyone, and take care Pam,

      Emily

    • Anonymous
      June 23, 2007 at 2:49 pm

      I’m 10 years CIDP? Just finished a series of Plasma exchange, did the IVIG about 5 years ago. No results from either. Was diagnosed at Mayo Clinic by Dr. Peter Dyche. New neuro who has a good rep. in the South seems that I don’t have CIDP, but a form of “hereditary neuropathy” he just checked my two children and found nothing. Much to my chagrin, he wanted to start a series of predisone. I’m three weeks into it, and have gotten hoarse, have trouble sleeping, and have a ravenous appetite. Any advice? I’m a 78 year old male.

    • Anonymous
      July 8, 2007 at 3:01 pm

      Had no problems until new neuro started me on prednisone a month ago. Hoarseness started about a week later and now it’s really hoarse. Going to the neuro next week and going to tell him what to do with the roids.