For those who read my previous post, you know I'm a little worried about the possibility that I may have MS and TN. I have no idea yet, but my question is: can you still live a normal life with MS and TN? I mean, can you make life bearable and can you still be successful in your chosen career?
I really hope I'm just over thinking things, but it's hard not to. I don't even have any pain anymore, but the thought of it returning and then having to do the battery of tests is just awful. Thanks again everyone and I promise, no more paranoid posts from me for a while.
ALL of us with TN have those days!! Its not you being paranoid. There are medications that can help control the pain, but with either MS with TN or just TN, flairs will happen. For the most part, we all live with it (as if we had a choice), and go on with life. That is not to say that the bad days are not horrible sometimes. Anti-seizure medications taken daily will help with the attacks for the most part. Some people have surgery (non-lesion type mostly), but you can lead a mostly normal life even with MS and TN.
You would do good to find a good neurologist, one who will listen...if they don't, go see another one. They are the docs that will help you manage your condition.
Keep posting...that is why we are here for each other! Only people that have it get the pain it causes!
I dont think you can live a very normal life with the Tn has a history of coming on more and more frequently and worsening over time You stay on anticonvulsants and cant drive . You are not a very good canidate for any of the surgerys. MS is more treatable it is a challenging combination. I have both I thinkit is stealing my life..
I have MS and ATN...was on trileptal and neurontin. The trileptal really made me feel crazy although it did help with the pain. Eventually I was referred to a neurosurgeon who recommended a glycerol rhyzotomy (sp?). I did that about 2 and a half years ago. My pain has come back again, big time, so I'm thinking that I need to have the procedure again. The neuro said it was a temporary fix. Basically it involves an injection of glycerol to the TN nerve root in order to bathe it in glycerol, which damages the nerve and relieves the pain. But as I said, it is a temporary fix. It really did help a lot and I didn't need the meds for a couple of years. Now I'm going to do a consult again because living on those drugs is very debilitating for me. Not everyone reacts that way to the drugs, however. But for me, the surgery was a lifesaver. Good luck with yours. I hope you have a good neuro who knows a lot about MS and TN. The MVD surgery is not recommended for people with MS because the cause of the pain is different and therefore has to be treated differently. Take care.
Hi, First I can say I can see why you are worried. It sounds like the pain in your face does have aspects of TN. For some people their TN pain is constant, and for some it does come and go. Do you have a good neurologist? Have they diagnosed you with TN? Have you been started on any TN medications? If it's TN, it will come back. The first thing I would do is make sure to have a good doctor for this symptom and be on good meds.
As far as MS, did the doctors see any lesions on the MRI's? There really isn't an area on an MRI that TN is seen. TN is actually hardly ever seen on an MRI according to the nine neurologists, and four neuosurgeon's, one being Dr. Takanori Fukushima, one of the world's best. So don't worry if they say they can't see TN on your MRI, doesn't matter one bit. If lesions are seen on a brain or spinal MRI, chances are good on the MS. If they are not, still doesn't mean you don't have MS, their is a form, primary progressive that lesions aren't seen as well. I have primary progressive. I tested positive for MS by having spinal fluid tested and I came up positive. What you might do is when choosing a neurologist to deal with your TN also choose one that is an MS specialist. I have an MS specialist who can also deal with TN and it's wonderful.
Finally, your question about working and having TN and MS. I had TN for six years and my MS symptoms were mild enough that I didn't really know that I had MS. I continued to work and everything was fine. I was like you, a jolt in the finger here and there, or a numb toe. Just this last year it finally hit me hard and due to constant fatigue, memory loss and lack of concentration I am unable to work. Don't worry about a battery of tests for MS. There's just an MRI and the spinal test. The lumbar puncture sounds bad, but not really. I'm a wimp, if I can handle it anyone can. Hah. Oh, I was getting to something...if your you're doing okay and getting to work now, just keep on doing it and enjoy life! Get medical attention, but go on with life and do as much as you can. I hope all your tests are negative!
Thanks to everyone for the responses. It's been about 8 months since that incident and I haven't had any issues since, but it still worries me from time to time. I've been suffering from mild anxiety, but I don't think that has anything to do with it. I was wondering, what do you think the chances are that it's nothing at all and just a one time weird freak experience? I'm really hoping it was, but it was just so weird. The neurologist said he really didn't think it was MS, but I'm not sure if he was just trying to not freak me out. I just keep wondering what else it could possibly be. Again, thanks to everyone for all your feedback.
Glad to hear you're doing well! In your original post you mentioned MDMA. This drug along and others can effect your central nervous system, and can definitely cause damage over time to possibly result in the symptoms you mentioned. Not necessarily in your mouth, but the brain of course controls the nerves in our entire body. Best probably to stay away. Advice I myself took. Again, glad to hear all is well. As for the mild anxiety, I hope that staying close to good friends can help lift those spirits :) Barrie
I feel that TN is the more concise quantity, given that it is typically extreme and relatively identifiable. The MS component is too spongy of a factor - please consider that it is in no way a certain diagnosis of a concrete disease with a fixed course. Rather it is the description of a syndrome of unknown etiology (never mind the theory du jour, they change often) and diagnosis is a cr@?shoot…
Odds are, we will eventually come to see things more in terms of processes shared more broadly, but what I mean to say is, please do not over focus on “is it MS or not?”, there is not nearly as much certainty in that as you might think right now, and even less certainty in the course of things.
Most importantly, you have much more control than you may realize just yet. Careful observation of processes and triggers allows for modifications that can seriously alter the course of things and your real life experience. It’s not a runaway train! Nothing is set in stone. You can understand your body to a greater degree and make a significant difference in your own life!
I have Primary Progressive MS. I was diagnosed in January of 2010 and the TN started in September of 2010, and at its worst since December of 2010. I am affected in all 3 branches of the trigeminal nerve and have had awful pain, with the exception of the 1st IV steroid treatment (subsequent trials have not worked), every night which usually peaks at around 1 am and lasts a few hors, thus waking me up from a deep sleep. I have tried now 10 different meds or combinations of meds, acupuncture, physical therapy, iontopharesis, phono paresis, and even had Stereotactic Radiation Surgery at the Mayo clinic where they screwed a metal frame onto my head and shot radiation into my head to try to kill the nerve. I have also tried chiropractic care but fortunately my husband is my best self made masseuse who seems to be able to find a spot to push on/massage that helps decrease the pain a little. Otherwise I have no relief except to get out of bed and try to find a way to distract myself, work with the pain. I had 2 Trigger Point injections yesterday and am hoping to get some sort of relief.
All of this being said my MS is less of an issue than the MS. In my case the diagnosis of MS was made inone month and was vey clear from the spinal tap. Sure my MS is a battle everyday, weakening me physically, and will soon make walking an impossibility. But… We all can choose our responses to things. For me I try to focus on the positives- - I have a wonderful supportive family, a wonderful husband in terms of his concern and willingness to get up with me at all times of the night when my pain seems to peak and try a massage, I can still work, and there are many worse things ppl deal with(although in the peak of my pain it’s hard to remember that), and now I have this website to gainsupport from. Many times I want to ask why me? But really that doesn’t change anything or take away the pain. My adage has become “what is,is”. I can only do today and can make each day what I can. I would love to have relief, believe me but in the meantime, I try to stay positive. I am not a “pie in the sky” type of person, just realistic. I hope I can somehow help someone else!
I have a long blog somewhere else but simply put it is totally possible to have a mostly normal life, minus soe sleep, with MS and TN.
I'm sorry to hear that you are still in so much pain. I hope that there will be some other help for you. I'm just going to start on low dose naltrexone...it is supposed to help with MS and neurological symptoms. That will be in addition to Tysabri. I had two glycerol rhizotomies and that did numb my face and scalp, but I have problems now with my eye because it does not sense when it needs tears. Extreme dry eye was threatening my vision, so I use a lot of lubricating drops and things are getting better. You might try a glyerol rhizotomy as that worked for me the first time around. I've heard that stereotactic laser surgery doesn't work so well for people with MS, but the rhizotomy does have some success in most cases. I can't have any more surgeries though.
Good luck and I do hope you find relief soon.
Thank you. I too can’t have any more surgeries as there is too great of a chance I could lose my vision and the doctors at Mayo said it would be a painful blindness. Glad it worked for you though.