Glossopharyngeal neuralgia
 

A fellow MSer has been diagnosed with this condition, but neither of us can find any information about it.

It's caused by inflammation of the 9th cranial nerve, and is characterised by severe neck pain.

Has anyone heard of it, and if so.....do you have any references for me so I can do a bit of research?

Hi Koala ..

I checked with the Yahoo search engine and there were quite a few references, this being one: http://www.ninds.nih.gov/disorders/g..._neuralgia.htm

You'd probably find it by googling as well.

It seems to be quite rare.

I was interested in your query because 20 years ago for about a week I experienced real difficulties speaking and swallowing and thought it was part of my MS. The neurologist seemed a bit lost but prescribed tegretol which I didn't take. It seemed to get better of its own accord. There was no pain, however.

Hope your friend is OK.

ahhhh, Koala, your poor friend!

sounds like this glossopharyngeal thang ALSO hits the tongue and throat, which I mercifully haven't had (yet)

Thank you ladies.....and yes Mrs B....your referenced material is exactly what she's been suffering. She said it's been agonising stabbing pain.

I have a feeling I saw somewhere that you're an Ozzie Mrs B. Is this correct? I'm in Tasmania (recently moved from NSW).

There is a considerable amount of information if you go to "google" and type in:

Glossopharyngeal neuralgia, multiple sclerosis

I read most of the info on the first page of references that came up, and there was some interesting things to consider; differential dx, potential for it to be something else very similar (considering the person has MS), etc. It's worthwhile to look into this . . .

Sorry about your friend, whatever is causing it. I had a numb mouth, tongue, throat and lips for several weeks one time, and it was scary enough. :eek:

Cherie

Thank you Cherie. I feel for you if you've been through something similar.

Unfortunately this must be one of the nasty symptoms that we might get.

I do appreciate your input. Thank you.

Yes, I'm a Victorian. I saw that you participated in one of the first betaseron trials in the late 80's. I did too, at the Royal Melbourne Hospital here. I didn't finish the trial either.

It was a three tiered trial. Some people were getting betaseron, some were getting a placebo and some were getting something they called 'transfer factor'. I think I was getting the latter.

Tasmania is becoming the place to be in Australia. Hope you're happy there :).

Yes Mrs B. I was one of the lab rats for the early trials for Interferon way back in the late seventies/early eighties..

The trial I was on was 3 tiered one as well.....Interferon, Transfer Factor, and a placebo. At the end of the trial I got a letter telling me I'd been on the Interferons.

I was in Hobart at the time, so that would be one of the reasons we never met up.

Soon after I met my now DH, and we moved to Melbourne, where we were married.

I'm rather interested to know why you said Tassie is the place to be now, as I only moved back at the end of Nov, after 15 years away.

We might have been in the same trial. I can't remember the exact date but it would have been after 1980 because that is when I was 'officially' diagnosed, although my first episodes were around 1971/72. I have a feeling it was probably around the mid-80's.

Tasmania? It is beautiful and not so spoiled by development as the other major states.

I believe that the cost of living is actually lower and that good employment opportunities exist. There was an article in the Melbourne 'Age' about this a few weeks ago.

The Western Ridges moved me almost as much as Uluru when I first saw them. Tasmania is one of the best parts of Australia :).

:D . :D . :D . :D

I do think we must have been on the same trial MrsB, seeing the dates match up, and there was only the one trial in Oz at that time! I know the trial started before 1983, but I can't remember just how long before 1983.

How uncanny is that.... that two of us on this borad were on the same trial? . :confused:

Good to meet you MrsB.

Labrats together.....and all that! :D

:hug:Hi Anne~ Sorry to hear about your friend' condition. You are a good friend to see info for her. Tell her that your NT friends' are thinking of her.
You take care too, Anne~:hug:

I wanna know what's wrong with this world that so many people get such crummy things happening to them. Hugs to your friend Anne, and very cool we have another Aussie!!!

OH! I mean Ozzie..........What do I know? Learn correct spelling every day! LOL!

Hey, Koala77,

Sorry to hear about your friend's dx.

Seems like people did a bit of research for you and your friend with good intell.

Best wishes for your friend from one Anne to another...

...All together now...Tie me kangaroo down....:hug:

OMG, :eek: That had to have been scary. Were the Dr.'s able to help at all with that?
I think I would have been bleeding all the time from bitting the inside of my cheek, I do this a lot as it is and I've never been numb there. :D

I agree Anna, you are a good friend to help like this.
I'm also sorry to her your friend has this, it sounds just awful and than for her to have MS also. Life just isn't fair sometimes. :hug:

Glossopharngeal neuralgia
 

I just joined this forum and would like to give my input on this ailment. I had suffered with this condition for two years on medication until I decided to have surgery.
In June of 2008 I underwent micro vascular decompression and have been pain free for 2.5 years.
There is hope beyond medication for this situation. Please feel free to contact me for further information or just to talk!

hi Koala. Nothing to add from my neck of the woods. sorry.

If someone can come tie down my kangaroo, i'd be a happy gal ;) I've got a nuisance mob across the paddock. I'll supply the rope :)

Hi there

I am a Tassie girl, born and bred and now living in NSW - we go back regularly, I always feel like I am coming home. It truly is the most beautiful place. I still miss it terribly.

Luck you - are you living in Hobart?

Lyn

Question
 

I'm considering surgery because of a painful relapse of glosso after 5 yrs of being pain free and am trying to locate surgeons. Would you consider giving me your surgeon's name? sharonc

Scallaway, this is a very old thread. Elantra posted that one time 3 years ago and has never returned. Hope you can get some info, and relief, from somewhere!

GN
 

I have it! Neck pain, ear pain, jaw pain. And it is progressive. Anyone else have it?