So Lately I've been experiencing some odd neurological symptoms that had been occurring before I started the medications and now I'm realizing that they have been going on for a long time (way before this whole TN fiasco started) and they have been getting worse and worse as time goes on. As of late I wake up with an awful headache everyday that isn't confined to one area of the head and makes me so nauseous that I sometimes dry heave. It gets better as the day goes on (which is weird you would think it gets worse) and isn't bothered by light or sound like a migraine would. I also feel this intense pressure at/inside the base of my skull like someone has put a balloon in there and is over inflating it (those tend to be my worse TN days for some reason). When I went to my occupational therapy appointment the other day they did a strength test in my hands and my left is significantly weaker than my right (now I know what you're thinking everyone's left is weaker than their right but I am an artist, lacrosse player, and I play the violin so my hand were normally close in strength). I dropped an entire container of gold fish food on the floor the other day because it literally just slipped through my fingertips and I thought I was holding it tightly and I'm noticing that my left hand can't go the same speeds doing tasks (such as typing) like it used to. The left side of my face is also going numb for some reason (when I'm not having a TN episode).The last odd symptom occurred today when I was walking to class. My left leg suddenly got an odd descending, patchy, cold feeling (kind of like when your foot wakes up from sleeping before the pins and needles part). I have no idea what's wrong with me all I can do is pray that this weakness doesn't flip over to my right side so I can keep going with school and my art.
THEN THERE WAS TODAY:
I went to my neurologist appointment today and I told him what was up and he tried to infer that all of this was making me depressed, so upset that he would suggest that I said no it just makes me nervous and scared because I don't know what's going on. Everything pretty much went downhill from there and I lost total control over my composure. He ran his neruo exams and they were all normal so at the end he was talking to my about anxiety and how "when we get anxiety thats a 10 out of 10 then thats when we need medications and have to talky to someone about it. Especially when it gets in the way of school work." Offeneded again I said "I don't really have anxiety. I am a straight A student in honors classes in college and I fur everything in on time. He got real quiet after that and said he would gee me an MRI but with no contrast dye……. He said he'd only give me contrast if something turned up on the regular MRI and we need to investigate further (he's only giving it to me to make me feel better probably). When we got in the car i felt like I had really screwed up by losing my composure in the appointment and my mom said she's email him about it because she genuinely believes that I'm not an anxious person and that I just had a bad emotional day today. I'm so sick of being written off by doctors and accused of being a nut job (anxiety freak or overly depressed) I just want to get rid of my TN and move on with my Life!!!!!!
Anybody have anny suggestions about what to do with this whole situation? Should I just tough it out until I'm 18 and then find a new neurologist and start the process all over again? DO you think my mom emailing him and explaining will help at all or just make it worse?? (I have sooooo many questions and not enough time to write them down :( )
Hi there,
Sorry you are going through this, and that your doctor is so unsympathetic. Your symptoms sound similar to what I experienced about eleven years ago. I had headaches, numbness, weakness, and assorted other neurological symptoms, all on my right side. I saw a few different neurologists, and also got the depressed , anxious diagnosis. I finally had an independent radiologist view my MRI, both with and without contrast, who advised me to see a neurosurgeon, as he suspected I had an Arnold Chiari Malformation. As this is a rare ,often misdiagnosed, or undiagnosed, condition, I sought a NS who was experienced with this disorder. He confirmed the radiologists suspicions, and I had surgery to correct it three weeks later. My TN is a direct result of this condition.
I am NOT a doctor, and do not mean to frighten you, but it sounds like this is a condition you may want to investigate. I went through many months of these strange symptoms, and saw too many doctors who found nothing wrong with me. It is very discouraging, but you, and your mom, have to keep looking until,you find an answer. In my opinion you should have an MRI of your brain and cervical spine, both with and without contrast. If possible, you should see a neurosurgeon who is experienced with Chiari Malformations, if only to rule it out.
Please feel free to ask me any questions you may have, and best of luck
I will look into this condition. Especially if the results of my MRI come back normal. I will keep you up to date on everything. Once again thank you so much. <3
Christine said:
Hi there, Sorry you are going through this, and that your doctor is so unsympathetic. Your symptoms sound similar to what I experienced about eleven years ago. I had headaches, numbness, weakness, and assorted other neurological symptoms, all on my right side. I saw a few different neurologists, and also got the depressed , anxious diagnosis. I finally had an independent radiologist view my MRI, both with and without contrast, who advised me to see a neurosurgeon, as he suspected I had an Arnold Chiari Malformation. As this is a rare ,often misdiagnosed, or undiagnosed, condition, I sought a NS who was experienced with this disorder. He confirmed the radiologists suspicions, and I had surgery to correct it three weeks later. My TN is a direct result of this condition. I am NOT a doctor, and do not mean to frighten you, but it sounds like this is a condition you may want to investigate. I went through many months of these strange symptoms, and saw too many doctors who found nothing wrong with me. It is very discouraging, but you, and your mom, have to keep looking until,you find an answer. In my opinion you should have an MRI of your brain and cervical spine, both with and without contrast. If possible, you should see a neurosurgeon who is experienced with Chiari Malformations, if only to rule it out. Please feel free to ask me any questions you may have, and best of luck
Oh god sounds just like my neuro appointment in the UK last week. I get right side numbness and occipital neuralgia as well as tn pain. Ive seen a physio who says that when the occipital nerves get trapped it brings on numbness particularly in the arms and hands. Iv had numbness right down the right side as you. Get a second opinion. Im in the process of researching an expert in tn to help me. Lots of love. x