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Multiple sclerosis (MS) is a chronic disease which affects the brain and spinal cord. MS can cause a variety of symptoms, including changes in sensation, visual problems, muscle we...
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Trigeminal Neuralgia
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Have any of you guys heard of Trigeminal Neuralgia and its link to MS? I never have until last week. I think I have it and here is why:
Several months ago I started having this slight pain in my right upper gum and along the side of my nose. I thought it was just from my sinuses because I had a sinus headache and some conjestion for a few days. I mentioned it to my hygenist when I was in for a cleaning so she tapped on my teeth with her instruments. My examination was perfectly fine, so she figured it was probably the sinus thing also, and to call the dentist it became bothersome. It went away for a few weeks, then the pain came back - even worse. It hurt to talk, eat, brush my teeth, blow my nose or wash my face. So I went in to the dentist. He took xrays and thought it might be an infection due to an old filling, so he put my on an antibiotic and had me come back 2 weeks later. The pain got worse before it got better, but eventually went away. So we figured it was due to an infection and we might do a root canal. Still, nothing significant was showing up on the xrays. The dentist referred me to an oral surgeon stating that he'd probably put me on Tegretol or Neurontin. I Googled Tegretol, which is an anti-convulsant/nerve pain killer. That then went on to explain Trigeminal Neuralgia (TN). The Trigeminal nerves are on your face that run along the side of the nose, down by your mouth and around the eye. What I found very interesting is that it said that the TN could be caused by either a tumor or MS. Well BINGO! - That would be me! The Trigeminal nerve's myelin sheath is also worn down. One website said that Baclofen is sometimes used to help treat TN along with either the Tegretol or Neurontin. I see my neuro in a couple weeks for a follow up from my last visit, so we will definitely discuss this. If he can treat this with medication, I'm not even going to go to the Oral Surgeon. I know I rambled on and on, but I just wanted to explain this and see if anyone else has ever heard of this. Oh the lovely trials and tribulations of MS. It's always a mystery! :-) I'll keep you posted on what my neuro says about it. May all of you have a Blessed Thanksgiving! Tina Posted on 11/25/08, 05:11 pm |
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Hi Tina,
TN is the only MS symptom that really gets to me. Let me clarify, I don't like any of them, but I can deal with all the other ones. It is very important that you have a neuro that understands and will treat you accordingly. I never know when it's going to happen, or how long it's going to last. Something as benign as my hair touching my cheek can cause me 10 days of excruciating pain. I have been waiting almost a year for my insurance to Okay gamma knife surgery that may or may not help. For now, it's topamax, keppra, and morphine when I need it...and that sometimes takes the edge off. 
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Hi Tina,
Last December I had nose pain that would come and go. It was on both sides of the bridge of my nose. My Primary Dr. gave me nasonex and other decongestants but I wasn't stuffy. After other Dr. visits, finally I saw an Ear, Nose, Throat Dr. who did a full examination and said my sinuses were fine. He sent me for and MRI and it showed lesions that could be MS. My legs also started feeling heavy around that time. I then saw a Neurologist who said my nose pain was not a symptom of MS. Well, I then got the cervical and thoracic spinal MRI's that showed more lesions and a spinal tap that showed oligloclonal bands consistent with MS. The ENT that I went to had 2 other patients that already had MS, come to see him with that same nose pain. I'm thankful to that Dr. for having that insight and getting me on the right path. I have since had more symptoms in my legs - tingling, numbess, heaviness, some pain. I think the whole process and getting me on treatment would have taken alot longer if not for Dr. Jones, ENT.
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bump
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Hi,
Over two years ago I had such terrible ungodly pain, and many misdiagnosis'. After a CT scan it was learned that I have Trigeminal Neuralgia, but worse off, that was when they noticed I have MS as well! I was shocked! And never.........had I heard of this thing called "Trigeminal Neuralgia". It is under control for the most part. I do have bouts of pain, such as lately I have. Stress has brought it on, made it worse. If you have'nt talked with your doctor about this, I think it's time for answers. Good Luck. Hugs
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Add me to the list!!! I was actually on neurontin for it too! ha! now i'm on amitriptyline and that keeps it away. muuuaaahh... although i could never remember what my doctor called this weird horrible pain!
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Actually, i'm now on nortriptyline, not amitriptyline... they are cousins, and amitriptyline made me sleepy.
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My mother has TN and her pain got
so bad that her neurologist starting giving her botox injections and it helps her. She takes them twice a year. I have never heard of this being done to anyone else, so I guess it's uncommon. She has a wonderful doc..who will go above and beyond to make his patients feel better. You could always inquire about it.
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Hi Tina,
I get TN too, I am somewhere in that twilight zone between undiagnosed Lyme disease and MS. I get twitching on my brow between my eyes, and on the side of my face, tingling. Take Care Dave
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TN is the most painful thing I've ever dealt with. And it is a problem of demyelination. Tegretol XR is the drug of choice. It took a few months to bring the dose up where it needed to be, but once I hit it the pain just stopped. It's as if someone flipped a switch. Better than narcotics.
Now I take it three times a day, every day, like my life depends on it. 600mg in the morning, 800 in the afternoon, and 600 mg at night. Here's a link I found helpfull: http://www.ninds.nih.gov/disorders...
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