My initial neuro appt is ten days away...but i've been getting some odd sensations and a few random pains on the other side of my face now. I've been going crazy looking up everything i can about TN. I couldn't help but notice that i seemed to fit into a criteria that had a high risk of MS as the cause (my age mainly) That led me to a list of early MS signs which got me nervous. I have been soooo tired for the past few months not to mention the unexplained weight loss (around 40 lbs since Christmas). I've had random twitches in my hands and legs...and I sometimes feel like a have bugs crawling on me when i go to bed at night. There have been numerous occasions since sometime before Christmas where i thought I was almost passing out (I suddenly got extremely lightheaded,everything would spin and my hearing went fuzzy... then everything got tingly before slowly going back to normal) I have no interest in being intimate with my fiance anymore. It hurts him soo much and that hurts me! Also as embarrassing as this is to admit I have not made it to the bathroom more than a few times when I got a sudden strong urge to pee. I could go on and on. I never thought any of it could be connected. I figured since it went away I didn't have to worry about it. But now I am VERY worried. I just don't want to sound like a hypochondriac to the neuro. This is my first appt. ever and i haven't even received an "official" TN diagnosis and i feel like if I go tell the doc all this they'll think I'm some pill addict or something and not take me seriously. When in reality I dread the idea of never being able to function normally without meds :( I don't really know what I'm asking here...I just feel so alone in all this. Any advice? What should I do? Focus on the face pain only? Or mention the other things too? Could I just be imagining this??
Hon, I don't think you will be in any danger of sounding like a hypochondriac. You have serious neurological symptoms and you need a full neurological workup, not just a discussion of possible trigeminal neuralgia. To help you, the neurologist will need to hear pretty much the same list you have shared above. It may help you to establish a good relationship if you write out an orderly list in advance of your appointment. If you'd like someone who has a good medical vocabulary to review the list before you give it to your doctor, then you may send it to me via site email (you'll have to "friend" me first), or off-board at ■■■■■■■■■■■■■■■■■■■.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Thank you soo much! I actually wrote up a list of the facial symptoms and all the dates i went to the dentist and emergency rooms and all that other fun stuff last night because I have a bad feeling I'll forget a lot once I'm actually there. Thats what led me to wonder whether i should bring up the other symptoms or not. I know I probably sound like a big baby...but this is soo scary for me. I'm only 21...my life just started..and I don't know how this is going to change things. I really appreciate the advice. I'm gonna send you a request as soon as i hit reply. lol. You don't know how much it means to me to hear that I'm not crazy for thinking this. Thank you for that!
Richard A. "Red" Lawhern said:
Hon, I don't think you will be in any danger of sounding like a hypochondriac. You have serious neurological symptoms and you need a full neurological workup, not just a discussion of possible trigeminal neuralgia. To help you, the neurologist will need to hear pretty much the same list you have shared above. It may help you to establish a good relationship if you write out an orderly list in advance of your appointment. If you'd like someone who has a good medical vocabulary to review the list before you give it to your doctor, then you may send it to me via site email (you'll have to "friend" me first), or off-board at lawhern@hotmail.com.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Bri,
Definitly tell your doctor everything, remember something-the dr. works for you, and this is YOUR body, peace of mind and relationship. I Agee you should write down any questions and concerns, in addition I would bring someone with you. It is always good to have support and often the other person “hears” things differently. Good luck!
Jodiann
That does make me feel a little better, I guess I never really thought of it that way [= My fiance says he'll try to ask for a day off work to go with me (i finally admitted going through it alone was really scary for me)...if not my friend would probably go if i ask her to. I imagine I would probably feel more comfortable that way. Thanks!
jodigirl said:
Bri,
Definitly tell your doctor everything, remember something-the dr. works for you, and this is YOUR body, peace of mind and relationship. I Agee you should write down any questions and concerns, in addition I would bring someone with you. It is always good to have support and often the other person "hears" things differently. Good luck!
Jodiann
Before I went to my first appointment (less then a month ago) I was very prepaired - I carried around a little notebook with me so that I could write down things that I wanted to tell the doctor. I kept a journal everyday also because I was afraid I would forget to tell him somthing when I got into the room (I get really nervous and forget stuff) I just didn't want to walk out of there thinking "ugh I should have said blah blah blah" you know what I mean? Make sure you tell the doc Everything that you are thinking about. I have learned a lot going through all this but one thing is for sure and that is the brain is a very powerful thing. I also thought that maybe I had MS and I was looking up everything I possibly could. It is okay to be educated, but give yourself a limit if you think you are over-doing it. Hang in there honey, everything happens for a reason, and this is going to make a very strong women out of you. Keep your head up, you can message me ANY TIME you want to talk. My pain started when I was 20 and started getting really bad in the last 5 months (I'm 24 now) I have pain on both sides of my face I can strongly relate to what you are going thru. -Sarah
That's exactly the way I am! I'm glad I'm not the only one at least lol. We do sound a LOT alike. I always feel like I left out something important afterwards so I'm trying my best to get organized and prepared ahead of time. But sometimes I feel like I am overdoing it and overthinking a little at times. How did your first appointment go? I'm curious what's going to happen. Like, what kinds of tests did they do? I don't know how well I'll be able to handle a poke on that side of my face!! lol I would really love to stay in contact with you. I need someone who can relate to what I'm going through. And i would love to hear your experiences too. It's very comforting to know that others have gone through the same things I am. And that comment about making me stronger really hit home. I feel like thats the one thing I'm going to gain from all of this..and thats one of the things that keeps me going! That and the fact that my 2 yr old needs her mommy regardless of what I'm going through. Thank you for being there...it means soooo much to me!
Sarah♥ said:
Before I went to my first appointment (less then a month ago) I was very prepaired - I carried around a little notebook with me so that I could write down things that I wanted to tell the doctor. I kept a journal everyday also because I was afraid I would forget to tell him somthing when I got into the room (I get really nervous and forget stuff) I just didn't want to walk out of there thinking "ugh I should have said blah blah blah" you know what I mean? Make sure you tell the doc Everything that you are thinking about. I have learned a lot going through all this but one thing is for sure and that is the brain is a very powerful thing. I also thought that maybe I had MS and I was looking up everything I possibly could. It is okay to be educated, but give yourself a limit if you think you are over-doing it. Hang in there honey, everything happens for a reason, and this is going to make a very strong women out of you. Keep your head up, you can message me ANY TIME you want to talk. My pain started when I was 20 and started getting really bad in the last 5 months (I'm 24 now) I have pain on both sides of my face I can strongly relate to what you are going thru. -Sarah
They just ask a lot of questions, test your reflexes, and some other nerve tests to see what you can/cant feel how sensitive you are and all that. I know its not easy to let someone go near your face but just keep in mind that it is to bennifit you. I have good days and bad days but I am just trying to focus on finding the treatment that is rite for me. I have allways had a plan for how my life is going to go - get married, have babies, buy a house... I feel like this has showen me that not everything happens "according to your plan" and if you are like me this is devistating. When I am feeling down I feel like I am being robbed of what should be the best years of my life, but when I feel good I notice it, acknoledge it, and appreciate it. I also over think EVERYTHING, I am allways afraid that people are going to think that I am making things up because they sound so completly rediculus to me (sorry I'm aweful at spelling). I hope the things I am saying are helping you to feel like you are not the only one who thinks this way. It actually helped me a lot when I saw what you wrote about researching everything and over-thinking. Don't start assuming things that you don't know that can make you lose it - have you had an MRI yet? I'm sure they will want you to get one to rule out everything. -Sarah
No, I haven't got any real testing done yet. I figured they'd probably want to do one though. And yes that is me too! I have caught myself saying things like "I'm only 21...why couldn't this have waited a while at least??" I def. feel like this is messing up my plan too. But apparently God just has a different plan for me. I'm sure his is better anyways. [= But it still gets to me. Everytime my face "calms down" I get so excited I have to announce it over and over ("My face feels so normal right now!!") and I take FULL advantage of it...but when it's bad...I'm bad too. And yes it is sooooo comforting to hear you say all this! thank you so much for that! I can already see the difference it's making in me...I notice the little things in life soo much more already! So at least theres a little bright side to all of this, right? lol
Stopping to smell the roses... :O
Smell the roses . . . just the other day I was walking with my husband feeling sorry for myself wearing a baclava to protect my face from wind and I stopped to soak in the sun rays and then I heard the birds twirping and then I cried. I felt so grateful to notice, to be outside and hear nature, to feel the sun, to be alive. Yes this makes us stronger and at 21 you will become one strong mama.
I have seen so many specialists that I keep a word file that has surgeries, family history, symptoms, triggers, how TN started for me, prior illnesses etc. I add new things as they come up on print it before the appt. This helps me to be calmer and not worry 'did I say this, or that' and I can focus on the appt and ask the questions I have on another piece of paper.
I hope your neurologist appt goes well and that you get answers.
Best wishes.
Bri,
Excellent suggestions about the list - I sat down on the computer and wrote a list of symptoms and added to it when I remembered or a new symptom started…and gave it to the doctor to put in my file. Do not allow the doctor to marginalize or dismiss your symptoms. If they do, find a different doctor! And understand that even if you receive an MS diagnosis there are many who are able to function relatively normal.
Also, be aware that a normal MRI result (standard for MS testing and Trigeninal Neuralgia) does not mean you don’t have it!!! The leisions and or compression or damage can be hiding and don’t ever let a doctor tell you it’s not possible. If they do, find another doctor! You may also want to add Lyme Disease to your research, which has many symptom similarities to MS (don’t overwhelm yourself - just be informed). I just learned recently that about 60% of the Lyme tests are inacurate. We have a special interest group here “MS and TN” you might want to join and connect with others who have both. You’ll find you can learn more from others than from most doctors, but don’t believe everything people tell you until verified by research or an expert. Good luck and try to stay positive!
Good advice Gloria --- I had a clear MRI for MS and TN and negative bloodwork for Lyme's so my GP is ruling them out, but I am sending my bloodwork to California (I am from Canada). Lyme's can imitate so many diseases, including MS, it is good to rule it out first.
Gloria E. said:
Bri,
Excellent suggestions about the list - I sat down on the computer and wrote a list of symptoms and added to it when I remembered or a new symptom started...and gave it to the doctor to put in my file. Do not allow the doctor to marginalize or dismiss your symptoms. If they do, find a different doctor! And understand that even if you receive an MS diagnosis there are many who are able to function relatively normal.
Also, be aware that a normal MRI result (standard for MS testing and Trigeninal Neuralgia) does not mean you don't have it!!! The leisions and or compression or damage can be hiding and don't ever let a doctor tell you it's not possible. If they do, find another doctor! You may also want to add Lyme Disease to your research, which has many symptom similarities to MS (don't overwhelm yourself - just be informed). I just learned recently that about 60% of the Lyme tests are inacurate. We have a special interest group here "MS and TN" you might want to join and connect with others who have both. You'll find you can learn more from others than from most doctors, but don't believe everything people tell you until verified by research or an expert. Good luck and try to stay positive!
Thank yo so much for posting this.
I have my first nuero appointment tomorrow and we have som very similar symptoms.
I have also been feeling like a hypochondriac, so reading your symptoms made me feel less crazy.
I really appreciated the response from "Red", and will write my list carefully before my appointment.
I will keep you updated, and you do the same.
Good luck Stephanie.!!
Not to try and get your hopes up, but my MRI showed no lesions, and hey have ruled out MS.
I feel relieved knowing what it is NOT.
My doctor felt that my pain was caused by either a virus or something else that I can't remember (thank goodness for husbands and family members who go to appointments).
Good Luck!
Hi Bribri I would tell the Dr everything, there may not be a connection between it all, but Dr need all the help they can get to make the right diagnosis. I would check out the simple too, like It could simple be a problem with your veterbre being out of place, what do you know about chiropractors…there some good ones out there. Good of good courage Muffet
Hey Bri,
I hope you're all right and not too worried. Just to put a few things in perspective, I'm your age, I was 22 on wednesday, and I've had ATN since I was 17. I may have some other neurological problems too, but I definitely don't have MS.
Also, as I'm not the sort of guy that complains about problems, I only ever go to the doctor whenever I have a list of about 10 problems! To boot, I have had cancer before and so whenever I mention something, a bump, a pain, of which I have a lot (I'm quite active, daring and don't take much care of myself so I'm often getting scraped and bruised etc), my mum will pretty much freak out! For this reason she makes me promise to mention every little thing to the doctor (which is fair, after all, I did have cancer!). I used to feel quite embarrassed mentioning so many things to the doctor, as if I were some sort of hypochondriac and have often been told by the GP "you only have a 10 minute slot", but I've come to realise most of them are out there to help, as much as earn a living. They want to be there for us and help us through a situation. On top of this, being honest can really help a situation, giving all the information can turn one serious misdiagnosis to quite a normal problem. I once mustered up the courage to say that I'd even (Edited by moderator)and immediately the doctor had a cheeky smile and lost the worry in his look and said "you'll be fine by the end of the day!", God knows what he thought my symptoms were from!!
I hope you're all right and that the worry's not too much. However bad things get there's always hope and things do get better. Not to mention I've learnt to appreciate every second where I'm not in pain or being looked after by friends that care! One of the most emotional moments in my life was seeing a kid from my school, who'd been wheelchairbound for as long as I could remember with MS, get wheeled onto a club dance floor on the last day of school. I felt a little sorry for him, but you couldn't believe what went through my head when the guy got up and danced! I'd never seen him stand up before, let alone dance and I'm pretty sure he's walking around quite freely now. What a night!
Love, Will
I want to thank you all for your replies...they have helped me immensely. I'm sorry i haven't replied until now...i spent the past few days wallowing in my own self pity due to the pain. It doesnt seem to be quite as bad today but I can feel it...just waiting to get bad. I've tried to calm down on the google searches but I'm still driving myself crazy. 7 more days until my brain can get some relief (I hope!) I'm trying to adapt myself to the pain but it's taking all of my energy just to get through the bad episodes. I keep telling myself I'm crazy and this is just a dental problem...but then theres the list of reasons why it can't be that. I tried getting myself into the dentist so they can prove to me that its not my teeth just for some reassurance that I'm not completely crazy. I figured I'd ask the neurologist their opinion on the dental work I'm supposed to get done next month. (I need two broken teeth on the effected side pulled..and they want to replace my missing teeth with a partial--which is a whole other issue for me and my insecurities...I'm only 21!!!...always had bad teeth...severe bottle rot on my baby teeth and my adult teeth broke a lot in middle school. It something that affects me a lot mentally. I had to have a root canal on my front two teeth on top because of an unknown cavity that caused a chip in the back where the two meet. I haven't trusted my teeth since.) But to get back on topic...I'm just so overwhelmed by everything. I feel like i need to be doing something about it...but its all one big waiting game. And times like this where the pain isn't as intense...it seems to settle into my mouth...which makes me very nervous about my teeth just breaking or something. I hope going to the neurologist will help stop all these doubts in my head. It just seems as though I have been almost diagnosing myself all this time (first i thought tmj disorder or bruxism...then maybe crowding....) and the dentist would just agree and send me home without answers. If it is somehow a result of dental problems will the neurologist be able to see that? I highly doubt it is..but like i said my brain is going crazyyyy!! I am kind of relying on this appointment right now. It has been a month of this misery with no relief at all. The urgent care doctor that referred me to the neurologist only prescribed prednisone (I'm not complaining at all...he was the only doctor that actually listened..he just wasn't trained for treating this). I figure it was his way of trying to be proactive...it just did nothing for my pain.(although for the first time in a longgggg time..i had an appetite...and food tasted so good!) I am left feeling alone and suffering every day..and I still have seven days left of this before I can even hope to get any relief. My worst fear is going to the neurologist and her seeing nothing wrong..and leaving me to suffer alone still. My fiance says if that happens we'll look into the Cleveland Clinic or someone in Columbus to help me. I just feel like such a burden..especially since I have no proof as to what it going on with me. I have been reading all of your responses and it made me so happy...i just couldn't get the energy to respond. Reading that somebody else was helped by reading this made me tear up. It really made my day! And I have been following all of the advice you have given me too! I looked into Lyme Disease somewhat and I've been preparing a folder to take to the neurologist with my medications and symptoms...what doctors I saw when...and other concerns. I don't have access to a printer or I'd print out one of those health history forms to fill out and take with me. I'm rambling and I can't remember if I've said everything I wanted to say. This is how it has been for me everyday. Maybe I should look into relaxation techniques??! lol You all are really what keeps me going. I can't thank you enough!
I'm interested in this Stephanie! Can you recall what they said may have caused it exactly? I'm glad that it was not MS though! Thats great news. I just hope you get to feeling better! And thank you!
Stephanie Rudin said:
Not to try and get your hopes up, but my MRI showed no lesions, and hey have ruled out MS.
I feel relieved knowing what it is NOT.
My doctor felt that my pain was caused by either a virus or something else that I can't remember (thank goodness for husbands and family members who go to appointments).
Good Luck!