Well, I gave in and went to a wonderful neurosurgeon at Brigham and Women's Hospital in Boston. He listened to my history of Trigeminal Neuralgia and did a follow my finger with your eyes exam (along with a let's see how you walk, etc.). I am not sure where to start. Ok. Let's start with the fact that he says I certainly have trigeminal neuralgia-like symptoms, but he is not 100% convinced that is what I have. The bilateral nature of it plus a few other things (I have lost my ability to feel temperature on BOTH sides of my tongue, but am only having a TN flare up on my left side, also I have been having burning and pain on my left arm and hand, and pain on the very back of my head) leave him with some questions. Then there was the follow his finger with my eyes. Apparently when I look to the left there is a slight delay. :(.
His Recommendations:
1.) Lumbar puncture to rule out M.S. (I do have a lesion on my brain, but it has been stable for 8 years, so my neurologists have always said not to worry about it. He thinks it is something we need to watch more closely).
2.) ANOTHER MRI of my Head. BUT THIS TIME an MRI of my SPINE which I have never gotten done before. I guess when you are looking for signs of M.S. there can be lesions there or something.
3.) Gamma Knife Radiosurgery to control my TN/TN-Like pain.
He had amazing bedside manner, and was very clear to say, "This is NOT a diagnosis, I don't want this to upset you. We just have to rule it out." But let's be honest, how can I not be upset? I realized I have one other neurological symptom I haven't told any doctors about. I have been having some difficulty swallowing (dysphagia). It has been going on for several months now, and I didn't think anything of it alone, but put together with everything else has me concerned. I know, I know! I shouldn't worry or get myself worked up. I just need to be calm and wait until all the results come back. I'm just scared. I'm 30, newly married, and we were hoping to start a family soon. BAH! I am getting ahead of myself. I just needed to vent.
Hi Sorry to hear about ALL your symptoms. To get an accurate diagnosis, please you MUST tell your doc about all your symtoms. If you don't their chance of helping you is greatly reduced, so please please let them know. I wish you well and hope you feel better soon. Vent as much as you want, we are all here for you.
Ann, you are absolutely right! I am waiting to hear back from my neurologist once she reads the notes from my neurosurgeon. At that point I can broach the subject. Thank you for your input and the well wishes!! It always feels good to know I can come here for support!!! :D
Hi LBHiker, I am 44 now and was diagnosedI with MS in 2008. My first attack was in 2002, the doctor told me I was having mini strokes at first, which scared the hell out of me. They then told me they wasn't sure. Then in 2008 I had another attack which confirmed my MS. In 2009 I had my first Tn attack, my MS nurse told me it was my MS., it was only in 2012 when my attacks got worse I told my neurologist and he confirmed I had Tn. I know exactly how you are feeling it is very scary and at times you wish it wasn't you. Like Ann say, you must tell them everything. When I told the doctors my symptoms in 2002 they just told me that theyddidn't know and sent me home. Six years later, I finally got through to them and they finally realized. Please don't leave it that long. Just t your results, good luckbecause you may have MS, hopefully not, it should not hinder your chances of having to family. I hope everything goes well when you ge
Thinking of you. Honesty, out in the open, talking & seeking more info can give positive power to you. Fears, especially of the unknown can sap your being.this site is very helpful. People are here for you.
Thank you all so much for your kindness! I had a c spine MRI and there are no signs of demyelination. I feel very relieved. However I do know that it is always something to watch for in the future, because M.S is something that can take years to get a diagnosis for.
Jason Sankey, thank you for sharing part of your story in order to help me!
Mary, thank you too for being here for me- wonderful words of advice.
Ann, I did end up contacting my neuro and telling her all my symptoms!