something strange with my mouth

    • Anonymous
      September 3, 2008 at 8:44 am

      I went to the dentist two weeks ago and the dentist noticed that the roof of my mouth, the entire thing is grayish/white. It should be pink. She said come back in two weeks and we’ll see if it’s still there.
      I went back yesterday, and sure enough. It’s still there. It’s gray. She said it’s very unusual and is going to confer with her collegues and decide where to send me. Probably an oral surgeon and she said not to be alarmed if they do a biopsy. She said I’m not getting enough oxygen to the roof of my mouth and so far, it isnt affecting my teeth.
      I have to keep track of what I eat and meds I take…but she said she’s never seen anything quite like this. She said cancer is usually in patches and not to worry so much.

      I just wanna know what the heck is going on with me now.

      I was scared enough just being at the dentist. I have nice teeth…but I tremble during a cleaning. I’ve never had a root canal …a filling is the most work…and braces.
      I’m gonna try not to worry…she said this is very strange. I guess I have another mystery for the dr’s.

      anyone else have this or know of anyone ?

      well wishes,
      Stacey

    • Anonymous
      September 3, 2008 at 8:48 am

      Hi stacey,
      I’ve never heard of this but I have had a lot of problems with my teeth and mouth since I was diagnosed. I basically avoid the dentist now. The last time I got my teeth cleaned in march i ended up with a bacterial infection which made me soooo sick and i was in bed for two weeks. Literally I could do absolutely nothing. High fever, exhuastion the whole nine yards.

    • Anonymous
      September 3, 2008 at 10:51 pm

      Stacey I had never heard of your problem before so I Googled “grayish roof of mouth” and found the NeuroTalk forum webpage that looks very similar to the GBS forum page. And saw that you found it too! Hope they are able to help you. Best wishes!

    • Dawn Kevies mom
      September 3, 2008 at 11:39 pm

      Stacey,
      So sory this crud keeps popping up. Just a way out there thought, Since the doc says there is a connection to the amount of oxygen getting to the roof of your mouth, is it possible that your lungs are not working to their fullest capacity? Asside from bladder and bowel issues, Kevin’s breathing was affected. He was continuously yawning and hiccupping, which both have to do w/ the amount of oxygen. Have you had blood work lateley? When is the ivig going to start again, is it loading doses or maint? I want to hug you, squeeze you and give you encouragement!!
      Dawn Kevies mom

    • Anonymous
      September 4, 2008 at 1:13 am

      Hmmm….

      Have you been taking colloidal silver? That was my 1st thought. I was thinking about that guy who was on Oprah who drank it & turned blue.

      2 other things come to mind as well. Like Dawn said, maybe your lungs are not working at full capacity & you aren’t getting enough oxygen.

      The other is probably pretty far fetched. I was thinking maybe you were anemic. You know how when an animal is anemic their gums turn white? Maybe your mouth turned a whitish gray from that. Like I said, that’s probably pretty far fetched though.

      Good luck,
      Kelly

    • Anonymous
      September 4, 2008 at 8:01 am

      yes, I did get on that neuro dental site…someone from here sent me there.
      The lady that replies, I believe is a dentist…and she asked about the colloidol silver, too. What on earth is that ? She asked if I had lead in my drinking water. I dont really drink much water at all.
      She said it could be a med,even maybe pepto bismol, that I dont take… also the mouth discoloration could be another disorder in the body… and to have a blood work up with the dr. Also follow thru with a specialist and that a biopsy would be a good definitive way to diagnose.

      I’ve been taking darvocett. I wonder if that has lead in it ? I’ve taken that many times before…never had probs, that I knew of. It’s not like we look at the roofs of our mouths regularly.

      I recently had the bloodwork…at least at the end of June when I was in the hosp. I guess I can call my dr and tell her what is going on now. Good grief.

      I saw the story about the guy that turned blue…I saw the end of it and never knew what made him that way. Yikes…I’d hate to think my whole body will turn gray ! I know it wont…but what a thought.

      The way it looks is like it’s dead. That’s the best I can describe it. Like moddling maybe ? I dont know if I’m not getting proper amts of oxygen from my lungs…I dont feel winded or anything like that.

      When I was diagnosed with CIDP, one of the blood work tests came back as “mild hypoanemia”…I never really knew what that meant….looked it up and still dont really know what it means.

      I dont feel good today…I’m suppose to get a maintenance dose of IVIG tomorrow. Not sure if I should if I’m not feeling well.

      what to do. This is just nuts.

      thanks everyone for your help ! Let me know if you think of anything.

      have a great day,
      Stacey

    • Anonymous
      September 4, 2008 at 9:01 am

      Googled colloidal silver: [url]http://en.wikipedia.org/wiki/Colloidal_silver[/url]