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Old 02-21-2008, 01:10 AM   #1
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Karen2008 HB User
Glossopharyngeal neuralgia with MS

Hi everyone,

I've just learnt that I'm in the midst of a new attack. Sometimes I find it ever so frustrating trying to determine what is MS and what is something else.

What's been happening for the last few months which I'd complained to my dr about is a terrible pain in my throat, which in the last few weeks became severe and lasting longer. The initial attacks were just short stabbing pains localised. I was told it was more than likely GORD, that was until the severe bouts struck, then I was taken more seriously. Had a camera down the throat last week and the pain hit again while under local which was the indicator it was neuralgia and also the fact my throat was fine. So off to my neuro was the next step only to have confirmed I have glossopharyngeal neuralgia which I could well do without. Eating was the only wonderful past-time that hadn't been encroached by MS...

I haven't really been able to eat much except soup, through fear of the pain when it strikes. I come close to passing out on the nasty long ones. The short ones are awful but you can continue with them in a sense. I'm now on the good old steroids and will have to start anti-epileptic meds to hopefully dull the nerve messages. The down side of this is they will make me extremely drowsy and have to be taken twice a day. I'm already struggling day to day with fatigue.

I'd truley love to hear from other who have had this or have this. Did it pass for you? How severe was it? Are you on meds for it and if so have they worked? I'm praying mine will go away soon...but it's been steadily getting worse arghhh...

Last edited by Karen2008; 02-21-2008 at 01:11 AM.

 
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Old 02-22-2008, 08:55 PM   #2
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anniebooboo HB User
Re: Glossopharyngeal neuralgia with MS

Gday Karen,
I have been plagued by terrible throat pain for the last two years. I am currently in Limbo Land but recent blood test results indicate "something" is going on, due to a very high ANA titre and a couple of other "off" markers. Investigations are proceeding still.
I will google some info on glossopharyngeal neuralgia, but I'm wondering if this may be a symptom that I too suffer. It is so painful. I have even gone to the ER with it! I was simply told it was due to reflux. This is one symptom that is so hard to tolerate. A regular Pain in the Neck! Ha!
Annie

 
Old 02-24-2008, 02:50 PM   #3
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Re: Glossopharyngeal neuralgia with MS

Hi Annie,

Such relief to get one response to this... I was told at first that mine was gastric reflux too. Seems people don't understand the difference between I'm in agony and a normal painful throat. I'll explain what my pain feels like and see if it's similar to yours.

Mine strikes in the same place on the right hand side of my throat, internally. I feel like I actually have a lump there but there's not as I've had the camera down to see. The pain hits me at varying times, like this morning I've had 5 short hits of it which is too much for the start of the day and now I'm too scared to eat as these ones happening while taking my meds. It can hit me just by swalllowing, talking, eating, drinking and even talking.

When it strikes it's a combination of chronic short stabbing needles with an unbelievable burning sensation. The short lived ones of a few seconds still bring tears to my eyes but it's the long bursts of a few minutes that break me. Haven't been able to eat normally for many weeks now. For some odd reason sweet things reallly trigger it off and that has me totally puzzled as to how the brain knows it's something sweet; maybe it's linked somehow with the tastebud messages? My throat in that spot also feels dry all the time. I was convinced I had something sinister in my throat that was ulcerated because of the pain and to learn a week ago that my troat is clear and that is neuralgia upset me as I get neuralgia in my face a bit plus my legs with the MS.

Judging by your post you don't know whether you have MS or something else? I remember many many years ago, way before I diagnosed that my ANA would come back dodgy but when repeated would come back fine. It used to really puzzle my doctor as he'd repeat the tests because they were abnormal. This happened many times over the years but later because of other symptoms and with the use of MRI and evoked response tests etc; my MS was finally diagnosed. It was a sense of relief finally knowing what was causing all the strange things going on but also upsetting knowing we don't have a cure for this...

 
Old 02-24-2008, 10:47 PM   #4
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anniebooboo HB User
Re: Glossopharyngeal neuralgia with MS

Gday Karen,
Your glossopharyngeal spasms sound dreadful. Mine are not particularly "sharp" or "burning" but "dragging". This is for want of a better adjective! It happens mainly on my right side (my worst side) and comes and goes. Some days I feel quite disabled by it all and it really affects my wellbeing. There was once a post about which symptom is the most difficult to live with. My throat sensation was what I posted.
My ANA titre came back 1:640. This is apparently a high reading and the dr is concerned enough to be ordering all sorts of tests. At last, some action! I really have felt like #*/! for a long time. I see her again tomorrow and will keep you all posted. I can't wait to have answers and start on a plan of action to get well.
Annie

 
Old 02-25-2008, 01:08 AM   #5
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Re: Glossopharyngeal neuralgia with MS

Hi Annie,

Apparantly the glossopharyngeal neuraligia can take the form of different sensations. It can just burn, just stab, feel tightened etc; plus it can have a combination of these. Mine started off being sort of okay, well bearable, it was just like a aggravated or sore spot I'd have every so often and that's all I thought it was until it got worse. I felt like there was something there in that part of my throat all the time for many months before this chronic pain stated. It is always in the same spot and mine feels like it's about the size of a 20cent piece or a little larger to give you an idea of how it feels. The rest of my throat is fine. It feels like it stabs from the outside of my neck through to the inside plus downwards a tad.

It is very debilitating and by far the WORSE symptoms I've ever had. I can deal with the other neuralgia I get, although it can be hard at times. But this one affects what you eat, drink, ability to talk etc; through fear of setting the pain off as it's so intense it stops me dead in my tracks. It['s awful as all the other pains I get on and off I steer my conscious thoughts onto a nicer place etc; but with this I get there...

Spoke to my neuro today and he wants me to continue prednisone for another 5 days and also start the neurontin tomorrow. I'm so desperate for relief from this. I've been trying so hard to research this condition and seek out others to see what they have tried, what's worked for them and what hasn't etc;. So far it appears acupuncture with some people seems beneficial but it's like all things; works for some and not for others. I have made an appointment to have acupuncture done next week and will let you know how it goes.

As far as ANA titer goes, I can't even remember what mine were when raised. I do know I just had them repeated a few weeks ago and it was normal this last time and I was in the midst of this latest MS attack when it was taken. My neuro checks me regularly as I think Lupus can be indicated with that tests?? And he's told me sometimes people can get Lupus and MS together; very unfortunate.

As far as other blood tests go, my white cell count sometimes is a bit off but not that often. All my other blood works are always great except for I have always, since I can remember, even since my teens, have had raised biribulin. It's never been way off the scale but always slightly raised. Don't know whether this is something common with people with MS or not.

I notice that you're from Aust as well. I'm from NSW. Whereabouts are you from?

Last edited by Karen2008; 02-25-2008 at 01:12 AM.

 
Old 02-26-2008, 03:58 AM   #6
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anniebooboo HB User
Re: Glossopharyngeal neuralgia with MS

Gday Karen,
I'm from Brissy!!
Saw my Gp today for next set of blood results - all came back fine with my fasting glucose (2.8) better than my initial non-fasting (2.0). She freaked at this early low reading - said I should be in a coma which is why she ordered the second test!!! Na! I had driven three kids to QML to watch me get the needle and had eaten like a horse and put in a full day of teaching too. Wow, I really am superwoman.
She still thinks something is up (so do I) and as she is stumped she is sending me to a physician close by. He has an dreadful reputation (Dr House style) as friends and families have had to see him. The dr warned me about his bedside manner too, but assured me he is the best. I will have a very long wait as he works through a public hospital (and we know how they operate in QLD!)
Anyway, she is very sure there is some type of autoimmune activity taking place. It's just a case of finding out which. I hope to get answers ASAP as I feel that there are long term changes taking place in my body.
My throat feels good today. I have no idea what to do when it strikes though. I'm surprised there haven't been more answers to the post. Maybe we are the only two who suffer like this. I'm still not even sure if I can claim glossopharyngeal neuralgia status. Seven different doctors would tell us seven different diagnoses. We have people out in space but no-one can tell me why I tingle/buzz/am weak and numb!!!
Gotta laugh or I'd cry!
Annie

 
Old 02-26-2008, 05:48 PM   #7
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Re: Glossopharyngeal neuralgia with MS

Hi Annie,

Hope you get some answers soon as sitting in limbo is ever so hard. I think the only way you will is under a nuero who observes you from here on in as most GP's don't tend to think of MS when you are in early stages...I know my GP used to look at me like I was insane when I'd say this happens to me on and off but it's not happening now. I have found in my travels that it's quite hard to find a GP well versed in MS. I'm sure that had I not been under a nuero because of the changes to my hearing, sight and balance orginally, that it would of taken longer to be diagnosed.

As far as this glossopharyngeal neuralgia goes, I've had an ENT guy first suggest it and then without telling my neuro what was said he also said that's what it was once he went through my symptoms. It's quite specific in the area that it strikes, so I think that's the real indicator. The sensations can be different but the area is the same. I'd say if you were under a neuro they would be checking that out. This condition is a rare symptom of MS, so unfortunately there's not too many people about that have it. I'm praying these epileptic meds will ease mine or cease it. It's awful being too scared to eat, drink etc; in fear of the sudden onset of pain which strikes continously and it's so severe. Yesterday it happened approx 6 times an hour!! Needless to say I didn't eat yesterday, just had continuous sips of water all day...

 
Old 02-26-2008, 11:29 PM   #8
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anniebooboo HB User
Re: Glossopharyngeal neuralgia with MS

Gday Karen,
I didn't even mention the throat to my neuro. I left it out of my very long list of symptoms because I was under the impression that it was due to reflux, and I didn't want him to think that I was waffling on with random complaints.
I will certainly mention it to dr House!
Annie

 
Old 02-27-2008, 02:03 PM   #9
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zadie HB User
Re: Glossopharyngeal neuralgia with MS

I too had this as one of my first symptoms and also thought it was reflux but medication did nothing. I had strange feelings down the back of my throat and felt like my tongue was swollen at the very back and tingling on the side of tongue. The first time I went to emergency and they basically told me I was an idot and there was nothing they could see. I also had pain around ear and under the jaw.
Michele

 
Old 02-27-2008, 06:03 PM   #10
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Karen2008 HB User
Re: Glossopharyngeal neuralgia with MS

Hi Michelle,

Mine started quite some time ago with similar symptoms you mentioned but then the intensity stepped up to unbearable. On this attack I have the piercing pain in my ear and I also get the sensation like something is crawling inside my ear on and off. I also get pain in what's called the mastoid bone alot and it's very painful. At present it's very very tender with this attack. The mastoid bone is the little pointy type bone just in the hollow behind your ear, you''ll know exactly where I mean if you get pain there. Mention it to your neuro on your next visit and keep it in mind for any time it reappears as if it is this type of neuralgia that''s appearing it's far better to get onto the steroids and other meds quickly before it gets to the point of where I am now. Mine is starting to slowly ease with the meds but it''s been a long hard few weeks and I've lost alot of weight plus it's affected me in the sense of created a fear for me attempting to eat normally through fear of sudden onset of pain which is unbearable. It takes me an hour to eat a bowl of clear soup...arghhh!!!

I'm actually going on Monday to try some acupuncture on it to see if it helps as my jaw is cracking and feel my jaw may be out of alignment and possibly adding to the problem.

Annie, never think you're waffling on with your list of complaints to your neuro. It's this list that helps him to understand exactly what the MS is doing to you and where it's attacking and to help guide with treatment. Tellling all this to a GP wouldn't be a good idea as they would just look at you as if you were insane as most of them don't understand the neurological affects of MS as they're not trained in this field, whereas your neuro does. Let us know how you go with Dr House.

 
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