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Old 02-23-2008, 10:15 PM   #1
Koala77
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Default 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?
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Old 02-23-2008, 10:22 PM   #2
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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.
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Old 02-23-2008, 10:31 PM   #3
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ahhhh, Koala, your poor friend!

sounds like this glossopharyngeal thang ALSO hits the tongue and throat, which I mercifully haven't had (yet)
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Old 02-23-2008, 10:35 PM   #4
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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).
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Old 02-24-2008, 12:09 AM   #5
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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.

Cherie
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Old 02-24-2008, 01:02 AM   #6
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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.
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Old 02-24-2008, 01:09 AM   #7
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Quote:
Originally Posted by Koala77 View Post
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).
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 .
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Old 02-24-2008, 03:20 AM   #8
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Quote:
Originally Posted by MrsBackyard View Post
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.
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Old 02-24-2008, 03:27 AM   #9
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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 .
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Old 02-24-2008, 03:33 AM   #10
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Originally Posted by MrsBackyard View Post
..... Tasmania is one of the best parts of Australia .

. . .
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