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Old 11-08-2008, 08:11 PM #1
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Default Ooops!

I guess my number of MS boards to frequent has been decreased to 2, NeuroTalk and very rarely MSWorld (hey, I gotta keep posting my weight weekly there!).

I got in trouble pointing out a user on another well known 'crack the whip' MS forum was flat out lying about their history of medications and experiences, and should stop fibbing.

Was it worth it? Well, I know a few of us here will know who I'm referring to, because we have been watching the progress of this one, and I finally saw more fibbing and said "enough is enough", flew in with the evidence, and now I'm 'Banned'.

Was it worth it? Oh hell yes. Because I'm sure enough people saw it. Not only that, now I get to grill the administration over the integrity of their board and how they seem to feel it's ok to embrace users that flat out lie about their histories to newly diagnosed MS'ers.

It's honestly disgusting, but I digress.
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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 11-08-2008, 08:47 PM #2
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Hi
I am sorry that you have had a bad experience elsewhere and we certainly hope NeuroTalk will always be a "user friendly" site.

We do request tho' that problems from other forums not be carried over here, and we would also request that if members have issues with other members they discuss these things in PM rather than on the boards.

In that light, I am therefore going to respectfully request that any continuation of this topic be taken to PM

thanks
Cheri
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Old 11-08-2008, 08:48 PM #3
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No problems. Anyone can feel free to contact and you can lock up the thread if you wish
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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 11-08-2008, 09:10 PM #4
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Hey Laura hows the

how you been? doing well I hope, thought a hijack would help here, and if gaztastic shows up cool,
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Old 11-08-2008, 10:56 PM #5
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Well I messaged you, lol. My mouth's suddenly back to burning in the past 3 days, go figure. NOT SMOKING. Still haven't had a puff or desire to have a puff since quitting.

Anyways... now I have the daunting task of trying to figure out.. is the burning mouth in fact connected to trigeminal neuralgia, and do I have atypical trigeminal neuralgia? My dentist said I had the classic TN... hrm.

I just need to find a treatment plan that works. Pain or no pain, I'm going back to work on the 24th. MS isn't going anywhere, Trigeminal Neuralgia isn't going anywhere (least not for now!) and my TMJ (Jaw) is all fired up because I've been chewing gum for the burning mouth!

Vicious cycle
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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 11-08-2008, 11:06 PM #6
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Quote:
Originally Posted by weegot5kiz View Post
Hey Laura hows the

how you been? doing well I hope, thought a hijack would help here, and if gaztastic shows up cool,

Ha! It should be Habanero instead of just Tabasco!

Laying on the sauce again, Dimpled One?

Hmmm..... I'm thinking you need another set of acronyms. TMJ, TN, MS, NS (non-smoker).
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Old 11-08-2008, 11:33 PM #7
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Congrats on quitting and continuing to quit Laura!

Speaking of hot sauce, tonight at our regular Mexican restaurant as I was snorfing down chips and salsa, it was so hot, that not only did my nose run, but my eyes watered too! That's late season jalapenos for you! You could use them to fry eggs!

Anyway, I'm sorry your burning mouth has returned. Have you tried taking lysine? It completely controls the problem for me.
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Old 11-09-2008, 01:33 AM #8
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Quote:
Originally Posted by ewizabeth View Post
Anyway, I'm sorry your burning mouth has returned. Have you tried taking lysine? It completely controls the problem for me.
Isn't Lysine the one that's for cold sore treatment specifically? It's spelled like, L-Lysine or something odd in the drug store?

I have not tried that one if it's the one I'm thinking, because it was specifically for cold sores. It may be something to consider.

In other news, I got some sweet digital pictures of the insides of my cheeks if my dentist wants them for his 'collection' haha. What I thought was Oral Lichen Planus is definitely not OLP (as confirmed already). I got the French word they suspected (secretary said "leukodem"... to me sounds like leukoderm or leukoderma) but honestly I think it's a build up of keratin (if that's the right word?) from smoking that HOPEFULLY will fade over time.

I'm considering trying 2 techniques to see if either works. One involves taking large amounts of beta carotene supplements (which works for Leukoplakia apparently in some cases... although what I have in no way resembles leukoplakia either).

Imagine a series of almost completely side by side lines that run from top to bottom of my cheeks like extremely fine wires. It's wild! The dentists all said "Benign" but are still sending me to a specialist in Feb. 09. So I guess we'll find out more then? Unless I can clear these patches up myself through no smoking and beta carotene

Course... another option is oral lycopene for leukoplakia. Since these seem like treatments that I may be able to read about myself and try myself outside of doing the doctor dance, it's worth a shot either way. Especially in the case of beta carotene.

I think the pain is almost 100% related not to mouth lesions etc... but to the TN or ATN idea. Because.. head pain came back, and so did the mouth pain. Pop back a Clonazepam, head pain (burning) subsides, as does the mouth.

Go figure.

WALL OF TEXT HITS YOU FOR 10,000 damage!!!!
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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 11-09-2008, 07:40 AM #9
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Hey laura have you post in the TN forums asking if others get BMS? you may be right

hey Gaz did I see you said you played french horn? I played in band for all my school years. I played trumpet, and could also play french horn, tuba, trombone, sax, clarinet and flute and picciolo recorder or what ever they call it now a days I could play a mulitude of instruments, just didnt follow that direction after schooling

hows this for saving your thread ooopsie
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Old 11-09-2008, 11:02 AM #10
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Six years of French Horn. I played violin, drums, trumpet, and piano too. But the French Horn was and still is my first love. I fell in love with it in the 3d grade and wasn't allowed to play it until 7th grade (when it was free lessons/instrument to use).

I'm still sad because I sold my horn (for far less than it was worth) when I was doing my kitchen years ago and needed money to finish the kitchen. My H told me that I never played the thing and had to get rid of it. But I had pulled it out at least 2-3x a year and oiled it up, polished it, and played it. I loved that horn.

You're a talented guy, Frank. I never identified with the reed instruments for some reason. But I do love the sax. Last night's symphony concert included a piece that featured the oboe. That's such an odd instrument.

Played in marching band, concert band, and orchestra. Sat 1st chair 2nd horn. My band leader had far more confidence in my playing than did I.


AVALANCHE OF MUSICAL NOTES HITS YOU for 7,500 damage.
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