Multiple Sclerosis (MS) Support Group

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Bon67 10/31/2012

The things I have been learning is so very interesting. I had an MRI of the brain and lumbar. It showed 4 lesions on the brain and nothing in the lower spine. I have DDD with two bulding disc's, the worst being in my lumbar area. I have had perihperal neuropathy in my left leg and foot from this and lower back pain. My new symptoms started 5 months ago, with all the tingling, numbness, muscle pain ect....I have not been diagnosed with MS yet, but now more than ever I really think this is what I have. I have had horrible sharp pains in the back of my tongue, I found out this is called glossopharyngealalgia, I also found out that that is the 9th cranial nerve and it starts from the brain stem and goes through the mouth and ear, I also have had the MS hug which I have learned it is from a lesion on your thoracic spine normally. I find it funny that the two things I have are from the two areas that I have not had an MRI. I do have an appointment on Sunday for an MRI with and without contrast of the cervical and thoracic areas. It should be interesting to find out the results, I would bet money I have lesions there. I love researching this stuff it is very interesting, thanks for listening. (((hugs)))

Bon67 10/31/2012

Sorry I spelled it wrong, it is glossopharyngeal neuralgia.

deleted_user 10/31/2012

You poor thing! But glad you are getting the MRIs to see what is going on. I know with my TN it is just.. beyond anything I can describe. I hope your GN is able to be controlled, are you on neurontin or lyrica?
I'm glad you posted about this, because it's got me thinking. A couple weeks ago I was sick, ulcers on my tonsils, horrible sore throat, etc, etc. I had pain all in the back of my throat, up through my ear, and all just on one side, with no ear infection or anything. I was taking my vicodin and it just barely helped. I also had a bad attack of my TN (and they both were on the left side, where my TN always is) and realized in my feeling so awful I hadn't put my lyrica in my pill organizer and hadn't taken it for a few days. Once I started back on it, the TN slowly went away and the rest of the pain cleared up. I had assumed it was because I was getting better. But I wonder if being sick had some swelling on that nerve or something as well. I think I will do a little more reading on GN.

Thanks for the info. I also love researching this stuff. :)

deleted_user 10/31/2012

I addded a reply- it did not post- I will type again later. Ellen

Bon67 10/31/2012

Hi Wendy, Yeah it is hard to explain. For me it felt like someone was cutting the back of my tongue with a knife everytime I swallowed, thank god it only lasts for a second or two each time. Very painful and soooo strange. (((hugs)))

deleted_user 10/31/2012

Bon- I will try my reply again-I have stuff on my brain MRI and no lesions on neck/spine MRI, I too have DDD and I too have had like a tingly think on my tongue on side like 2 x, not so much numb but tingling.Tx for the long word info-vever hear of it.Please let us know how MRI' s progress Hug-Ellen

deleted_user 10/31/2012

I hope you get answers soon and Im sorry you're having so much pain. I've been having hug sensations in between my shoulder blades and spinal symptoms for years and recently had MRIs of all areas... and no lesions were seen on T spine, which the Neuro was surprised. I think they just are tiny and can't be seen. It's frustrating having so many symptoms without evidence other than the few tiny specs on my brain! I've never heard of MRIs being scheduled on Sundays.. LOL- good for you for finding someone to get it Done ! Keep us posted..

Bon67 10/31/2012

lol@Dairy. Yeah I was shocked that I get to have it on Sunday to. I guess it is open 24hrs a day because the MS clinic is attached to the hospital (Swedish) in Seattle. Yeah me.

Bon67 10/31/2012

Thanks Ellen, I will let you know. (((hugs)))

deleted_user 10/31/2012

I dont know if this is the same thing but for weeks I had a burning sensation on my tongue and roof of my mouth. Now Im getting stabbing pains in my jaw, temple, eye and ear...started on my left side and is still mostly there but it is on the right at times, Oddly enough, I've had problems with my left eye (graying of vision, pain) since last year. (of course my visual evoked potentials came out "ok")

Geez Bon, you had trouble spelling thai? lol!

Bon67 10/31/2012

lol@Leah Yeah such an easy word to spell huh? That sounds like kinda the same thing, (((hugs)))

lchoppel 11/01/2012

Nobody wants to have MS, and I don't want for you to have MS, but I hope with this upcoming MRI that you find validation for all your symptoms. It's crazy that you have had an MRI with 4 lesions on the brain and not been dxed yet. Good luck, and feel better soon.

Bon67 11/01/2012

Thanks choppel, she said my lesions on my brain are inconclusive and they didnt light up on contrast, so she cant diagnos me until she sees whats on my MRI of the neck and thoracic spine. She says most of my syptoms sound like fibromyalgia and since I smoke, she said smoking can cause lesions on the brain, this is coming from an MS specialist, so I have to trust this one, where else is there to go? lol...((((hugs))))

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