I was diagnosed with MS last week. Apparently it’s an unusual presentation with both TN and glossopharyngeal neuralgia. The specialist saw a lesion on my MRI that corresponds with the cranial nerves on the brainstem that are giving me trouble. I start MS medications sometime next month. I take Trileptal for the TN pain and I’m still in the process of ramping it up to get relief. Currently I’m up to 750 mg. I’m wondering if TN caused by MS has any treatment besides drugs, but hoping that the Trileptal will help soon. Thanks.
I am aware of a few cases where neurosurgeons were willing to attempt MVD with patients who also have MS. But I believe a lot might depend upon the placement and numbers of any detected MS plaques. This is truly an issue for discussion with a medical professional -- first a neurologist then a neurosurgeon who does MVD several times every month with TN patients.
Regards and best,
Red
Have you looked into Reiki or Accupuncture? Do you have the book "Striking Back" -- I could not have done this journey without it - and this site
Oh - also do you have a local support group for MS or for TN? that I would utilize
Hi Monnie,
I have MS and TN as well. To date I have not found any non drug treatment to work. I keep looking though. I also take Trileptal for the TN pain and have added Lyrica. I am trying a solumedrol treatment of 3g over three days and 7 days of prednisone to ween off. So far the results are encouraging. Getting started down the MS path can be confusing. If you want to talk message me anytime.
Erik
Hi Erik, I see you also live in New Jersey. Who do you see for your MS care? I drive 3 hours to see Dr. Kister at the St. Barnabas MS Center in Livingston. I’ve only see him once, a week ago, which is when I was diagnosed. I go back in a couple weeks for a spinal MRI and to choose a drug for treatment. Which one do you use and what do you think of it?
Thanks,
Monica
Hi Monica,
I use Dr. Katz in Clifton. He has been very good to me. When the TN thing was at its worst and I was ready to give up he pulled me through. His words to me were "I will stop this no matter what". With that said he did tell me it could take a month or two to get everything right. So far I have been good most of the time and am living life O.K.
I have heard of the MS Center in Livingston but have not gone there yet. I am sure someday I will walk through their doors. For now I am happy with the treatment I am receiving. Let me know how they treat you and what you think of their care.
I am on Oxcarbazepine & Lyrica for the TN. Low Dose Naltrexone, Diovan, and Copaxone injection for the MS. I did find the MS meds helped the TN quite a bit. Kind of makes sense as the TN is a exacerbation from the MS. I also get Solumedrol when I exacerbate. If you have MS you get to like Steroids! I'll never forget the first time I got Solumedrol infused. It was like going through a cloud into a blue sky. The symptoms that had bothered me for years just lifted away. The copaxone is a pain in the butt as you have to inject every day. It seems to work though as I have no new lesions in 4 years. I sure wish I was Dx a few years earlier! I also find fish oil with the TN meds help speed things up. Its kind of weird but it defiantly helps me. I have also been looking into other vitamins. I guess if I think it might help I will try it.
For me staying active helps with the MS immensely and intern helps with the TN. I have to force myself to keep active sometimes. I do notice a hugh difference when I don't keep going and its not for the better. Eating & drinking can be difficult. I do it when I can. Usually a hour and 45 minutes after taking my pills. I take them three times a day so I get three squares most of the time.
Hi Monica. I just came across your post. I also have MS and I live in Jersey too! I started with a horrible TN attack four weeks ago. ( My third one) My doctor started me on 100 mg of neurontin 3x per day but it was increased over the course of a week or so to 1000 mg per day. I have heard good things about the clinic at St. Barnabas. I go to MS center at Centra State hospital in Freehold. I hope you are feeling better.