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Possible/Probable MS & now possible trigiminal neuralgia


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Old 06-18-2007, 07:09 AM   #1
Pearlscale
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Possible/Probable MS & now possible trigiminal neuralgia

I have posted a few times. June 3 neuro told me possible/probable ms maybe since early 90's when my first symptoms began. Since my last relapse I have had intense pain in left jaw/teeth,face,ear. I was trying to hold off until my appt June 30th when I have SEP and VER then see the neuro. But the last few days the pain has gotten unbearable. Yesterday was the worse. My PCP is open on Sunday, so I went. He said possible trigeminal neuralgia (TN). He is going to contact my neuro today. He put me on carbamazepin 100mg twice a day. I'm to half that dose for the first 2 days. I have many other symptoms but this far outweighs them all. I am 56 years old and I think that is making them slow to diagnose. TN is also connected to MS in some cases from what I understand.

Anyone have TN and are you better. Any thoughts? Suggestions?

Prayers...Marsha

 
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Old 06-29-2007, 12:20 PM   #2
reynoda
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Re: Possible/Probable MS & now possible trigiminal neuralgia

Quote:
Originally Posted by Pearlscale View Post
I have posted a few times. June 3 neuro told me possible/probable ms maybe since early 90's when my first symptoms began. Since my last relapse I have had intense pain in left jaw/teeth,face,ear. I was trying to hold off until my appt June 30th when I have SEP and VER then see the neuro. But the last few days the pain has gotten unbearable. Yesterday was the worse. My PCP is open on Sunday, so I went. He said possible trigeminal neuralgia (TN). He is going to contact my neuro today. He put me on carbamazepin 100mg twice a day. I'm to half that dose for the first 2 days. I have many other symptoms but this far outweighs them all. I am 56 years old and I think that is making them slow to diagnose. TN is also connected to MS in some cases from what I understand.

Anyone have TN and are you better. Any thoughts? Suggestions?

Prayers...Marsha

Hi! I'm Dana. I was diagnosed with MS in Jan '07. I'm in the middle of my 2nd flare of TN. First one was a year ago. It's been going on for 5 weeks now. I'm taking gabapentin for the pain which helps a bit but not fully & I have to take up to 6 pills a day. Last night I didn't get any sleep because of the pain in my jaw, ear, & left side of my head. I choice not to go the steroid route since I had just had a round for another flare in Jan/Feb. My original neurologist wouldn't see me before I saw a dentist to rule out TMJ which totally annoyed me because I knew it was flare as I'd gone to the dentist last year & a maxofacial DR. the first time to rule bad teeth & TMJ out. I went to my PCP who diagnosed TN & then I switched neuro's & he confirmed. If only they'd have looked at my MRI results which showed a lesion on my pons. TN is rare... but TN with MS is more common. Some are hesitant to diagnose it because I don't have the lightning zings just the nawing pain. I don't have any suggestions on how to deal with it as I'm still learning too. Just know that you're not alone in this.
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Old 06-30-2007, 08:48 PM   #3
Pearlscale
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Re: Possible/Probable MS & now possible trigiminal neuralgia

Thanks Dana
Slowly improving. Its been difficult. Seem to be having alot of other problems. One of which is new. I seem to drop things alot. If its something that has a light hold, then I drop it. I also have more jerk type movements. That might have something to do with the dropping problem.

I did have 5th nerve MRI. Saw Neuro Thursday. Based on all my clinical history and MRI results and other test results she feels sure its MS. The 5th nerve did not show a lesion but she still thinks the TN is related to MS in my case. I do too.

She wants me to consider a disease modifing drug. Maybe copaxone. She says it has the least side effects. Wants to see both myself and Larry when I go back.

Got alot to consider. And PRAY about!!!

Are you one one of the drugs and which one.

Anyone else with advice is very much apprciated. When they start talking injections, thats a lot scary.

Prayers....Marsha

 
Old 07-01-2007, 03:14 PM   #4
reynoda
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Re: Possible/Probable MS & now possible trigiminal neuralgia

Hi Marsha!

Glad to hear you're dx'd. I'm on copaxone & have been for 4 months. It's daily & I use the auto injector that has a tiny tiny needle that you don't see. I knew I couldn't deal with the flu-like symptoms & more possible depression which come with the interferons - I have the bad habit of acquiring the side effects of drugs I take. My aunt on the other hand is taking rebif (interferon) & has had no side effects. Check into them all before you decide. There's no immediate rush; but, the sooner the better in the long run. The copaxone's side effects are mild for me (itchy sight reaction for a day or two). So far so good for me. They all are supposed to provide about the same benefits so you need to figure out which one's going to work best for you. You can change them along the way if needbe too.

Pray alot & take care!
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Old 07-01-2007, 10:43 PM   #5
Pearlscale
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Re: Possible/Probable MS & now possible trigiminal neuralgia

Reynoda
Thanks for the words of wisdom. I do pray and look for the answer. That still quiet voice is very quiet. But I'm sure the answer will come. The Lord has helped me thru this whole illness he won't stop now.

I have probably had MS for 14 or more years. But the last 2 have changed. I have had 5 flares. Before the last 2 years, it was just face and lf arm pins and needles and fatigue. Little things. But now I'm a little bit afraid the monster is trying to wake up.

Any info on copaxone will be a big help. The Dr just said she thought it might the best one for me. But my husband and I are to sit down with her on the 9th and discuss what this means. She did mention me going to another major city about an hour away to see another neuro/MS specialist. I told her that all 4 neuros I have seen one of which was ms specialist, had said possible then later probable MS. I just didn't want to see any more. I trust her judgement.

I am a little scared. Knowing just a little of what is ahead. But for 2 yrs, I was treated for Lyme Disease. Many complications and starts and stops. Some IV's and some Orals. Treatment was for many months. My lyme test and spinal both now show no lyme. But I know what that treatment was like and think this cannot be any worse. Can it????

Anyone else out there, any info appreciated.
Thanks and many prayers.
Marsha

Last edited by Pearlscale; 07-01-2007 at 10:49 PM.

 
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