I have had TN for over a year now. Had an MRI post first couple attacks that showed no tumour pushing on the nerve but 2 demylination spots in my brain. Year late more neurological signs including altered sensation on the left side of body and a weird buzzing/electric feeling that shoots down my back and arms when I bend my head forward. Along with a few other symptoms I think it is MS. Explains the TN the neuro symptoms and the blasted everlasting fatigue. If I could mainline caffeine I would. (Not really) but that is how blasted tired I am. I am on tegretol which for the most part is still holding the attacks at bay, except for the odd one. Just wondered if anyone here with TN has been dx with MS.
NorthernRN -- turns out that we have a good many more than 25 MS patients in our member database. I've just released a message to the first 50 people I found who have that diagnosis or have been seriously evaluated for it. I will include an invitation to all of our TN/MS patients in our next periodic newsletter, to join our MS group and add their thoughts there.
I was diagnosed with MS 13 years ago next month but have probably had it for 30+ years. While the Neurologist my mother took me to when I was in my teens knew there was something wrong unless you had typical MS symptoms there was no way to diagnose it. (I had vision issues and chronic migraines.).
I didn’t have any major MS symptoms until 14 years ago but the MRI looked more like a cancerous brain tumor. Took a few months to rule that out and finally come to MS. MS is one of those that there is no specific test for. The doctors have to rule out other things first.
Based on the info you listed above, I would say you have MS. I would strongly suggest changing your Neurologist if you aren’t getting anywhere with the one you are seeing with the TN. I didn’t start with TN as an MS issue until 3 years ago. I actually feel lucky to have TN as a part of MS vs on it’s own, as it comes and goes like other MS symptoms. People with just TN have it much harder.
I completely understand your symptoms as I have them all. :). Fatigue at the moment is killing me. When you use all your energy to get out of bed let alone dressed, is so difficult. The sooner you get diagnosed and on MS meds the better you will be. Everyone who has MS has it differently and their symptoms get better or worse differently but the meds do make a huge difference.
I am currently on Tysabri for MS and I haven’t had any new major exacerbations since I started on it. Please feel free to contact me if you want someone to talk to. Good luck!
You have essentially described my experience on the TN/MS journey! My initial stabs of face pain sent me to the Neuro who ordered an MRI where they found two small lesions in my brainstem. They related that to the Bell's Palsy I had a number of years ago along with a number of other strange occurances I had over the years. ( dizziness, buzzing, burning feelings etc.) My neuro immediately said MS but sent me for another MRI to rule out tumour and something pressing on nerve. I was all clear for that so it came back as MS and I was sent away with meds info for me to decide on which one to take.
I went for a second opinion at the MS clinic and they said it was too early to tell. This went on for a few years where I would have these strange experiences (including fatigue) for a few weeks but they still couldn't be definite on the MS diagnosis because my symptoms weren't classic like Optic Neuritis etc.
Finally I had a bad bout with TN and I took IV steroids and I responded to that. My neuro said that meant it must be MS, but he was only 98% sure! He has written me letters for school stating that I have it, and has also signed papers for Med. marijuana which requires some disability to be eligible. But there's that nagging 2%!
All of this is to say that MS is definitely a frustrating disease to diagnose and there is no one test that can be done. I understand where you are coming from and all the feelings that go along with having both of these illnesses. It does sound like you have MS to me. This is not the worst thing in the world either...I think TN is! : ) I wish you the best and hope that you can manage your pain and fatigue so that you can still have a good quality of life.