What a 24 hours. I started at my neuro who suggested that I call the Cleveland Clininc as soon as I got home. I did and to my surprise they got me in the next morning so off we went 6 hour car ride to Ohio. I am back home scared to death but very happy I went there. The Doctor put me on Tegritol twice a day along with the neurotin that I am taking. What scares me is the spinal tap he performed looking for MS. He said having Atypical TN at my age along with some of my other symptoms and based on my family history we need to look at this as a possibility. I have to say what a wonder place the ceveland clininc is. I have never had doctors sit and listen the way they did. It was not about haw many patients they see in a day it was about caring for the patient they were with. Now I wait!!
I too may have MS because of this typical/A-typical TN at my age (diagnosed at 17, 18 now), How old are you if you dont mind me asking?? I feel that if I was diagnosed with MS then in a way I will be relieved that I finally know and understand these strange symptoms ive been getting as well as TN (spasticity, fatigue etc). It is scary stuff but isnt always as bad as the stories show, I know a couple of people myself with the condition (including family members) who get on with most of their life with very few symptoms. You must stay strong through this!!! Im struggling to remain strong myself as its very stressful and affecting my school work but I have to at least try to remain strong because of my exams.
Good luck x
Alana Cowell said:
I too may have MS because of this typical/A-typical TN at my age (diagnosed at 17, 18 now), How old are you if you dont mind me asking?? I feel that if I was diagnosed with MS then in a way I will be relieved that I finally know and understand these strange symptoms ive been getting as well as TN (spasticity, fatigue etc). It is scary stuff but isnt always as bad as the stories show, I know a couple of people myself with the condition (including family members) who get on with most of their life with very few symptoms. You must stay strong through this!!! Im struggling to remain strong myself as its very stressful and affecting my school work but I have to at least try to remain strong because of my exams.
Good luck x
I am 38 years old. Yes I feel that if I am diagnosed with MS then at least I have an answer for why I feel this way and to all the strange things that have happened to to me. I hope that the tegritol that he put me on will help with the ATN. The swelling in my eye every morning is really scaring me.
Yhh, does the swelling hurt at all? Good luck with the tegretol, hope it helps. I tried tegretol but after 200mg the side effects got too much and I had to stop. Ive got a new doctor now so trying plenty of new medication, on amitriptyline, I doubt its going to be very effective but we’ll see. x
please rest easy, yes MS is serious but this is always the first thing they look into for why people are having TN signs. esspecially at a young age. it shouldn’t take to long to get the results. glad you found a good doctor! that is one of the most important things!
I’ve been talking with TN patients for over 15 years. The number who have both TN and MS is estimated at something on the order of 5% of TN patients. Medical literature also recognizes patients whose “TN face pain” could also be characterized as having an origin in MS plaques on the trigeminal nerve.
For those wishing to get a sense of the directions of an important thread in research toward a cure for MS, I recommend a visit to “The Myelin Repair Foundation” at http://myelinrepair.org/. I have started an active correspondence with the Foundation’s leadership, in efforts to identify promising lines of inquiry that may lead to myelin repair techniques effective against facial neuropathic pain. I will post any results I see here at the livingwithtn.org forum as well as at the TN Association website.
Go in Peace and Power,
Red