MG Tongue
 

Greetings from Tasmania, Australia, and thank you for all the wonderful posts and information on this site. This is my first post as a new member.

After reading some posts that mention tongues I had a look at mine and was horrified at the vision of this thing I keep in my mouth! I was of course aware that it doesn't behave quite normally, along with my facial muscles, which my neuro said he expects to be the last to respond to medication. But I wasn't prepared to see this discoloured, grooved and scarred-looking object. There is no pain and food still tastes normal.

I am wondering whether this could be permanent damage or whether I can expect improvement eventually. Not that it matters that much I suppose as I don't go around showing it to anyone else.

Any responses will be appreciated.

Cheers, Marian :p

Hi Marian,

welcome to the forum from a fellow Aussie, I'm over in Western Australia.

I'm sorry I don't have any answers about your tounge, but I'm sure someone will be along with some valuable info.
Look forward to seeing you around. How long have you been diagnosed???
Kate

Hi Kate
Thanks for the welcome.
I was diagnosed by blood test by a savvy ophthalmologist in October 09 after consulting him for sudden onset double vision. Started Mestinon a few weeks later after seeing my first (unsatisfactory) neuro, but at least it got me the Mestinon. My condition deteriorated with all the usual extensive effects, almost to the point of needing intubation so spent Christmas in hospital receiving IVIg under the care of the neuro there who seems to know what he's about so I continue to see him. Left hospital on Mestinon, pred and Imuran and have made a wonderful recovery almost back to normal until this week only taking Mestinon as required since I was obviously overdosing as my condition improved. Now it's just my facial muscles and tongue that need to respond to the meds (neuro says this is often the case), but as long as I can see and breathe I figure I'm not doing too badly. I am learning to pace myself and not try to do 100 things at once when feeling at my best.
Best wishes
Marian

Hi there Marion, and welcome to Neurotalk from another Taswegian.

I'm pleased you found your way here to NT and in no time at all, I'm sure you will be too. This is a great site with lots of caring people ready to give advice and ready to help in any way they can.

Unfortunately I can't help with your questions, but I did want to welcome you to the site.

I'm NOT a huge fan of Wikipedia -- but, this was the only site I found that had pictures. Are you talking about a "geographic tongue"
http://en.wikipedia.org/wiki/Geographic_tongue

or a "fissured tongue"
http://en.wikipedia.org/wiki/Fissured_tongue

or something else?

I am HORRIBLY Bulbar -- and have horrible allergies. My allergy doctor looked at my tongue over 30 years ago and FULLY expected to see a geographic tongue. Close to 99% of his patients HAD geographic tongues. I was the RARE bird who had a normal tongue. Everytime I visited his office, I had to stick my tongue out for everyone to see -- such an oddity I was. Anyway, my tongue is STILL normal -- even though I choke, slur, gag, can't whistle, can't move food around my mouth effectively. So, I'm not really sure if the appearance of your tongue is connected to the severity of your MG. OR, maybe once again, I AM THE ODDBALL!!

Hello and a great big welcome to you!

I don't know anything about tongue issues as I have never disscussed it with my Dr. I just figure it is all a part of MG.

Thank you, Jana, for taking the trouble to look up this info. Mine is very much like the pic on 'geographic tongue' with the addition of whitish lines that look a bit like scars, tho from what I don't know. I shall do some further research now you've pointed me in this direction.

Thanks for the welcome, Joanmarie. I haven't yet discussed this with my doc either as I just became aware of it, but will do at the next visit.