He thinks it's strange that I have pain on both sides (switch hitter)
He thinks it might be a virus (something like menengitis) or another form of nueralgia (I don't remember)
He wasn't concerned about the other problems I had had (burning in one leg, numbness in one hand, extreme fatigue and confusion etc)
He didn't think it was TN because I have a sensitive spot on the lower part of my jaw. I tried to tell him about the tenderness behind my eyes, but he was more interested in the jaw.
He doesn't think I have MS because the MRI (with and without contrast) was clear.
He wants to see me in two weeks.
On the upside, I withdrew from my college courses, so hopefully the de-stress from that will help get me out of bed. It's been nearly a month and I haven't been able to budge from my bed.
The tegretol seems to be helping as the constant pain has decreased as has the pain from the lightning bolts. Maybe there is hope.
I was told that if Tegritol takes the pain away, you have Trigeminal Neuralgia. I have also been told that a clear MRI does not guarantee a diagnosis of TN or MS. I am sure more experienced TN supporters will be responding to confirm.
I hope you get answers soon and it is nice to hear that your pain is decreasing.
I'm sorry you had such a terrible appt. There are going to be many before a good one comes around. About your extreme fatigue it may because be because of your pain. Constant pain makes everyone tired, it's our bodies way of dealing with it. The confusion also can come with the pain, the pain can take over so much of you. I have bad short term memory now because the pain gets so intense at times. Also being bilateral (I am as well) you probably aren't getting a good quality sleep. I have trouble sleeping on either sides and the pain will wake me a million times a night. I still haven't found a way to get some sleep but that might be where you're fatigue is coming from as well. I pray you will find some relief soon.
I so hope you are feeling better soon. My heart goes out to you as you are easing yourself through this tegretol fog. Remember to tell your doc how severe the side effects are and it's okay to ask for something to take along with the tegretol to help combat the pain another way. Tramodol was one they gave me along with tegretol in the beginning of my journey. I still use the tramodol each day, but for the severe nerve pain I use gralise (a time release neurontin) that is much more effective than neurontin that you take 4x p/day. Apparently, if there is a low dose released each hour or so, the body will use it more efficiently. Plus, I have migraines, so my doc uses the migraine protocol for the headaches and the added benefit is that it effects the trigeminal nerve. It does not take care of all of the nerve pain, but it certainly knocks it down enough that the med doses each day are lower. I will be praying for your perfect peace through this and for the right meds to be used in the right amount and combination. Take care, sweetie :-) LyndaS
Sounds like a duff Neurologist to me. I don't think your pain would diminish with Teg if it were not TN. The pains you describe in the lower jaw and eye have been reported by LwTN members. Many members have clear MRI's but if they opt for surgery many times a vessel is found. Bi-lateral TN exists although it is not common. When I started on Teg I suffered exhaustion and fatigue for weeks until I acclimated. That said every option should be pursued in case there is something you do need treating along with TN.
Of course he has more neuro knowledge than me and may be right.I know the other posts say what I do but I wanted to re-enforce everyone's writings. I hope for more relief for you soon, suffering is bad! All the best and keep us posted.
I too have seen a neurologist who in all honest opinion I thought was talking out of his rear end! When I was admitted to hospital he told me my side effects weren't from the tegretol (the medical team stopped the tegretol and they wore off so they WERE from it, and the medical doctors agreed with me) and the biggest load of rubbish he told me was it "can't be TN because your attacks last longer than a few seconds". WTF. Sounds like he read the first sentence of a TN description in a medical dictionary and thought he knew it all. Tegretol took away the pain (and now gabapentin since I reacted to tegretol, and amitrip helps too), I *know* I have TN (ATN to be exact). I really really hope I get his registrar in my outpatient appointment and not him. I would be prone to tell him he is full of you-know-what! So let's hope we both see people who actually know what they are talking about in the future!