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Old 02-21-2009, 11:40 AM #1
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I think this thread is turning into poetry in motion!
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Old 02-21-2009, 12:15 PM #2
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Given your symptoms, and that you perhaps didn't have lesions in the brainstem area before (?), he should be checking this out. MS isn't the only disease that can cause these symptoms ....

He knows you've opted out of Copaxone for the time being, right? If there are lots of new lesions, then he would know that Copaxone hasn't really been working for that purpose anyway. He, of course, would want you to try something else if there is negative activity too . . .

Good luck, Laura.

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Old 02-21-2009, 06:33 PM #3
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Well, my neurologist is kinda in the dark about all this. The MRI results will be sent to him. I'm sure he's going to soon know that I'm going FOR the MRI, but it's the GP who's ordering it.

The headaches are not new, but since they're almost daily, along with the burning pain (heck, burning mouth since June or July of 2007) they want to explore the brain stem area. It was never imaged originally.

I don't know what they'll find there. In a way part of me is hoping "oh, a mass that they can remove maybe!!" and symptoms will go away. But a mass of whatever can also be very bad, and if it's in the brain stem, perhaps inoperable.

In any event... we've pretty much ruled out a blood disease/anything to be detected in the blood. Now we move on to other areas I guess .
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 02-22-2009, 12:09 AM #4
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Quote:
Originally Posted by dmplaura View Post
The headaches are not new, but since they're almost daily, along with the burning pain (heck, burning mouth since June or July of 2007) they want to explore the brain stem area. It was never imaged originally.
It seems likely you had brainstem involvement early on, given your symptoms from the get-go, so it makes sense they get a baseline.

Good luck, Laura . . . and hopefully everything is relatively stable.

Cherie
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Old 02-22-2009, 10:56 AM #5
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Thanks hun

I told my GP that my spine was never imaged, and I'm certain I have activity to note there.. but she didn't seem to think imaging the spine was that important at this time (and maybe not, based on my persistent symptoms).

If things weren't crummy enough, I woke up after 1 hour of sleep last night, to a vicious migraine. So bad I was gagging from nausea for 30 min and decided to visit the ER. It's amazing how fast they whip you in through the place when you go in clutching your head, eyes blood shot and probably as pale as a ghost.

They had to go through 2 bags of migraine meds before I began to feel relief. You think steroids are bad, the migraine medication (if you haven't had it before) is the pits in comparison. Steroids are bad, but this stuff dried out my mouth AND tasted awful as heck. Thank goodness for Trident freshmint.
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March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 02-22-2009, 11:50 AM #6
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Oh, wow, Laura. I'm so sorry. I think I've told you that the girlfriend of a friend of mine is a neurologist whose specialty is migraines. I think I'm going to see them in the next couple of weeks so let me know if there's something you want me to ask her.
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Old 02-22-2009, 12:15 PM #7
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Quote:
Originally Posted by Bearygood View Post
Oh, wow, Laura. I'm so sorry. I think I've told you that the girlfriend of a friend of mine is a neurologist whose specialty is migraines. I think I'm going to see them in the next couple of weeks so let me know if there's something you want me to ask her.
I actually didn't know this, or at least remember you telling me about it. But we've discussed a lot so you probably did before

I know what you can ask her... why is it that I had auras back in 2000 about 4 times, but never again saw them? I never had headache with them, but it has been a mystery to me why I've never again experienced it (not the flashing lights, but 1 eye going gradually gray to losing all sight in it, and seeing what appeared like a crescent moon in my eye for about 20-30 minutes, and then gradually it just disappeared and my eyesight returned.

I understand they are related to migraine, but why would I experience that during a specific time frame, never to experience it again (thankfully)? Are auras attributed to certain things (food, environment)?
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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