Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Tingling In The Face, Lips, Teeth And Tongue

  • Please log in to reply
4 replies to this topic

#1 elainegh



  • Members
  • Pip
  • 3 posts

Posted 18 December 2006 - 11:41 AM

I just diagnosed myself after reading on the internet, with systemic sclerosis. I had been misdaignosed by a rheumatologist and sought out a major specialist to confirm my own suspicions. My major system is the tingling and numbness in my face, mouth teeth and tongue. My hnds had carpal tunnel and were swollen but after a few days on Prednisone they are better. I have a little discomfort after eating and a poor appetite. Does anyone else have the face symptoms?

#2 Elehos


    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 18 December 2006 - 12:44 PM

Hi elainegh,

I've definitely had my share of that on and off, but don't have any answers from the doctors as to what the exact cause is. Since it could be something serious in your case, please get to a doctor ASAP if you haven't already--I can share my experience, but don't want someone to be injured by thinking we have the same thing happening. This summer, I noticed that I had developed a weird intolerance to an over the counter pain reliever, and began to have seizure-like muscle spasms throughout my body (no loss of consciousness), but it all started with the tingling face, lips, gums, and tongue. Once I dumped the over the counter pain reliever, these "episodes" have stopped, so maybe that's the only thing that caused the tingling in my case. Let's hope so! Do you ever feel like you have burdock on your tongue? Just curious about that one. I hope that you can find the cause and have it treated right away, and welcome to the board!

Best wishes,

#3 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 18 December 2006 - 01:40 PM

Welcome to the forum! I'm so sorry to hear of your very recent diagnosis, but I'm glad you have found us and joined us so soon. You probably already know that you are in a good place.

I use to get the numbness and tingling in the face and tongue, but that symptom has since disappeared. In seems like as soon as one disappears, another appears. Anyway, the numbness was really bad after eating or drinking anything cold or cool. I've since gone to room temperature or warm drinks only.

You mentioned in another posting that you were diagnosed based on blood test results. I always find it interesting how some doctors depend on that while others don't. 3.5 years ago when I was diagnosed with dSSc, the only antibodies test I had was the ANA. My diagnosis was based primarily on symptoms. It wasn't until a couple of months ago that my pulmonary doctor tested me for the scl-70 and anti-jo and they were both less than one. My aldolase was high (13) indicating MCTD which I do have (dSSC and PM). So I guess my point is that a negative result doesn't mean that you don't have it, just as a positive outcome doesn't mean that you do. The auto-antibodies patterns are great indicators, but it's always those actually symptoms I like the doctor to pay attention to.

I glad that the prednisone has helped out with the carpal and swelling. For me, prednisone helped with that heavy fatigue. I hope it continues to help you.

Again welcome to the ISN family! We're glad you've joined us and hope to see you posting often.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 18 December 2006 - 02:54 PM

Hi Elainegh,

Welcome to the sclero forums. We are so happy to have you here, but sure sorry it's because you are ill. Janey gave you some great advice and a good link. Sometimes it takes years for all of this to fall out and become apparent of what's really going on.

I sure hope you doctor is able to help you with the tingling feelings you are having, I know that must be a strange feeling! I did have the once, but it ended up being a mild sensory case of Guillain Barre Syndrome- not related to Scleroderma.

Again, Welcome!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Heidi


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 571 posts

Posted 18 December 2006 - 03:56 PM


Welcome to the forums. I am so glad you have found us but sorry it is because of your recent diagnosis. I am not a doctor by any stretch of the imagination, but the sensations you have described in your face sounds like it might be some type of parathesia (I get this in my hands and arms). I had it in my arms so badly that I could not sleep and would just pace the floor and cry. My rheumatologist treated it with Neurontin and it made so much difference for me. My hands and arms still go numb and having burning/tingling sensations at night and off and on in the mornings, but not to nearly the degree it was before I took the Neurontin. I do hope you can get some relief soon.

I hope you will come here and post often.

Warm wishes,