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Neuro exam in 1 week - need advice!
Hello, I've been on the boards for a few months now, popping up here and there. I've gotten to know a few of you: Lulu54, FrankieT, Samandsprout ( hey girl, where've you been??!). Thanks for all your help.
Male, early 30s, it kind of all started back in June of 2008, when I had a few lightheaded and cold clammy hand spells that would last one hour.. I'd be able to drive, go about muh beh-ness but just a bit "loopy". These episodes tapered off by the end of the year from twice a week in June to once in December - I was put on hypothyroid pills 6/2008, this may or may not have had an effect in the gradual reduction of loopy spells. But there have been some weird symptoms for the past 5 months or so. Oh yeah, smoked for 13 yrs, quit since March (YAY!), former heavy drinker 2004-2006...
Starting April of 2009, a slow flurry, wait, that's an oxymoron - a slow creep of symps (my made up word) have appeared, dissappeared, reappeared, or vanished. My rear thighs sometimes have a mild burn, oh and it's not muscle pain - I know the difference. Sometimes my calves feel tight. My hands have gotten numb upon waking up. I had cottonmouth for a week. For a couple of days last month my right hand started getting warm when using the mouse. A week later it was my left. These symps have no identifiable "trigger". The loopy spells from a year ago started again last week. It's been like an X-files "monster of the week". I just hope the monster isnt you know who :(
I am going for a neuro exam in a week (love my insurance, no referrals needed!). How do I behave, do I act the informed, info-savvy, "well doc, Lulu54 said..." patient, or the "uh, like, what do you think it could b, doc?" lay patient? I've done enough reading to know about Lhermittes test, Hoffmans test, the eyes-to-nose test, the Babinski reflex test, etc. Do I walk in and ask for these or let Doc lead? I don't want to be brushed off or told "it's stress! You're a young guy!" How do I get the most out of this? Do I ask for an MRI? Oh, I do have a symp journal, sheesh, it's almost an hourly log of the last 4 months :( Anything you can add will be appreciated. I'd like to hear from the few guys on these boards as well.
Male, early 30s, it kind of all started back in June of 2008, when I had a few lightheaded and cold clammy hand spells that would last one hour.. I'd be able to drive, go about muh beh-ness but just a bit "loopy". These episodes tapered off by the end of the year from twice a week in June to once in December - I was put on hypothyroid pills 6/2008, this may or may not have had an effect in the gradual reduction of loopy spells. But there have been some weird symptoms for the past 5 months or so. Oh yeah, smoked for 13 yrs, quit since March (YAY!), former heavy drinker 2004-2006...
Starting April of 2009, a slow flurry, wait, that's an oxymoron - a slow creep of symps (my made up word) have appeared, dissappeared, reappeared, or vanished. My rear thighs sometimes have a mild burn, oh and it's not muscle pain - I know the difference. Sometimes my calves feel tight. My hands have gotten numb upon waking up. I had cottonmouth for a week. For a couple of days last month my right hand started getting warm when using the mouse. A week later it was my left. These symps have no identifiable "trigger". The loopy spells from a year ago started again last week. It's been like an X-files "monster of the week". I just hope the monster isnt you know who :(
I am going for a neuro exam in a week (love my insurance, no referrals needed!). How do I behave, do I act the informed, info-savvy, "well doc, Lulu54 said..." patient, or the "uh, like, what do you think it could b, doc?" lay patient? I've done enough reading to know about Lhermittes test, Hoffmans test, the eyes-to-nose test, the Babinski reflex test, etc. Do I walk in and ask for these or let Doc lead? I don't want to be brushed off or told "it's stress! You're a young guy!" How do I get the most out of this? Do I ask for an MRI? Oh, I do have a symp journal, sheesh, it's almost an hourly log of the last 4 months :( Anything you can add will be appreciated. I'd like to hear from the few guys on these boards as well.
YAY! Had my neuro zam and I have no abmormal reflexes! Finger-to-nose, heel walk, toe walk, bend/rise, closed-eyes-manuvers, balance, Rohmberg, and Babinski tests = absent/negative. The doc was cool, he didnt sheepherd me out of the office (which is only 1 block away from me) and was a cool guy. But he did suggest a EMG test (not even urgent, he said "eh, whenever, in like 2 or 3 months"). He did mention something about a difference in reflexes between my left and right wrist, but after trying the action again it happened as it should. I guess the point is that nothing glaringly bad occurred. I have reason to trust him. Interesting about the AM/PM disparity, Weakandfalling, and yes he did give me a copy of the results.
I do have a bizzare and mild tickle on my right heel which occurs ONLY when I rub my right shin harshly. This has occurred off and on since last month and does not occur when running, exercising, walking, or climbing. Um, also the rear of my thighs might have a slight burn, and this ONLY occurs when sitting, and sporadically as well.To be realistic about this, the presence of these mild nueropathies is interesting, and yet unresolved, hence the EMG suggestion,. "Peripheral Neuropathy" as you all know, so it seems to be occurring even with neuro exam with positive (as in good/not bad!) but let me know what you think. I wonder why that is... any ideas? And thanks everyone for your help!
I do have a bizzare and mild tickle on my right heel which occurs ONLY when I rub my right shin harshly. This has occurred off and on since last month and does not occur when running, exercising, walking, or climbing. Um, also the rear of my thighs might have a slight burn, and this ONLY occurs when sitting, and sporadically as well.To be realistic about this, the presence of these mild nueropathies is interesting, and yet unresolved, hence the EMG suggestion,. "Peripheral Neuropathy" as you all know, so it seems to be occurring even with neuro exam with positive (as in good/not bad!) but let me know what you think. I wonder why that is... any ideas? And thanks everyone for your help!
One more thing. I am amazed and impressed that your initial exam with your new neuro is actually going to be taking place late in the afternoon at 4:00 P.M. To me, that is a point in your new neuro's favor!! I actually have never heard of a first neuro exam being scheduled for that late time, when, in actuality, all initial neuro exams for MS should be held late in the afternoons when the MS symptoms are most likely to be present themselves in a noticeable way!!
Every initial neuro exam I have ever had was scheduled for early morning. It seems that most neurologists schedule them for early morning. That is nonsensical and uncaring to me because MS symptoms are often not even noticeable in the morning. How many of us can walk and do just about everything better in the early morning compared to late afternoons??
So, I am hopeful that, due to the logical scheduling of your appointment, your new neuro will be one of the rare good ones who really cares and will not blow you off.
Good luck!!
WAF
Every initial neuro exam I have ever had was scheduled for early morning. It seems that most neurologists schedule them for early morning. That is nonsensical and uncaring to me because MS symptoms are often not even noticeable in the morning. How many of us can walk and do just about everything better in the early morning compared to late afternoons??
So, I am hopeful that, due to the logical scheduling of your appointment, your new neuro will be one of the rare good ones who really cares and will not blow you off.
Good luck!!
WAF
Hey guy,
This is probably going to be too late a post for you to see before your neuro exam, but I will just say that I feel it is important to let the doctor know that you want a copy of everything - especially the physical/neuro exam. Unfortunately, this is necessary today because a few doctors (probably not most) have been known to falsify their notes, making abnormalities normal. By letting him know you will want a copy of everything, you have put him on guard that you will be aware of what he writes about you - so maybe that will help keep the write-up of your exam accurate!!
Imagine my surprise and disgust when I discovered that my last neuro exam (in which I had a positive Romberg, flunked the heel-to-toe walk, and was generally unstable and off-balance) was written up as being perfectly normal. In her notes, my neurologist had written "negative Romberg, good heel-to-toe, and good gait). Everything neurologically about me was normal (in her remarks on paper that is).
So many patients never know what was written about their neuro exams, they just trustingly believe their doctors wrote what really happened and really, that is what one would expect from a so-called professional. Again, I feel most doctors would do the right thing, but to be sure yours is in that group, and for your own records, always ask for copies!!
WAF
This is probably going to be too late a post for you to see before your neuro exam, but I will just say that I feel it is important to let the doctor know that you want a copy of everything - especially the physical/neuro exam. Unfortunately, this is necessary today because a few doctors (probably not most) have been known to falsify their notes, making abnormalities normal. By letting him know you will want a copy of everything, you have put him on guard that you will be aware of what he writes about you - so maybe that will help keep the write-up of your exam accurate!!
Imagine my surprise and disgust when I discovered that my last neuro exam (in which I had a positive Romberg, flunked the heel-to-toe walk, and was generally unstable and off-balance) was written up as being perfectly normal. In her notes, my neurologist had written "negative Romberg, good heel-to-toe, and good gait). Everything neurologically about me was normal (in her remarks on paper that is).
So many patients never know what was written about their neuro exams, they just trustingly believe their doctors wrote what really happened and really, that is what one would expect from a so-called professional. Again, I feel most doctors would do the right thing, but to be sure yours is in that group, and for your own records, always ask for copies!!
WAF
Well, my zam is today at 4 pm. Good thing it's right up the street from me, cept I work 20 miles away from home! I hardly had time to arrange my symptom chart, but I'll have to do that today at work at some point. Who knows wat to expect, and can't imagine it will be too bad. I'm going to list to him my symps, and show him my chart, and any past exams from other docs, all I can really do on my end. There is a video on youtube that shows how a neuro zam should be conducted; it seems like a professionally-made training video. It is pretty informative. Not sure what else to say from here, but I guess I will let you guys know how it all goes!
Well, Ive been keeping a log but the one I will bring into the dox office will be a truncated one, with only the majorest issues highlighted. Well, this thing is in two days, on Wed, so I'm a bit apprehensive. I've been doing all of the balance tests and self evals that I can think of, and everything seems to check out. So what's with these minor sensations that I feel throughout the day, or even every couple of days that come and go without logic?
I swear these symps are driving me nuts cuz theyre so minor and sporadic!
As far s the MRI, look, I live paycheck to paycheck, and I don't know how much an MRI will cost. I do have excellent insurance, so it's like a 90/10 "they pay" a this point. Also, how about those nerve conduction tests, the EMGs, and the VEPs to check for nerve weakness... can those be done at the test or are they a completely separate thing? I guess Im asking is, what is the extent of what might be done at this exam?
Samandsprout - hope you had a great time in Miami!
I swear these symps are driving me nuts cuz theyre so minor and sporadic!
As far s the MRI, look, I live paycheck to paycheck, and I don't know how much an MRI will cost. I do have excellent insurance, so it's like a 90/10 "they pay" a this point. Also, how about those nerve conduction tests, the EMGs, and the VEPs to check for nerve weakness... can those be done at the test or are they a completely separate thing? I guess Im asking is, what is the extent of what might be done at this exam?
Samandsprout - hope you had a great time in Miami!
Hi, you! Sorry I have been MIA. Just got back from a nice long vacation, which culminated in a magical day at Disneyland with my kiddos.
I'm excited for you, that you are finally going to see your neuro. Everyone has already given you excellent advice, so I just wanted to pop in and give you my support.
Also, after letting the doctor lead, if you don't feel satisfied in his/her answers or additional tests ordered, it won't hurt, I don't think, to ask if an MRI could help rule things out. A clear MRI could really put your mind at ease. I wish I had had a clear one way back when, haha!
Good luck to you!!
Samandsprout
I'm excited for you, that you are finally going to see your neuro. Everyone has already given you excellent advice, so I just wanted to pop in and give you my support.
Also, after letting the doctor lead, if you don't feel satisfied in his/her answers or additional tests ordered, it won't hurt, I don't think, to ask if an MRI could help rule things out. A clear MRI could really put your mind at ease. I wish I had had a clear one way back when, haha!
Good luck to you!!
Samandsprout
Okay...just a bit of advice here but I think you will benefit from it! You said "Oh, I do have a symp journal, sheesh, it's almost an hourly log of the last 4 months"...no dr is going to read an hourly log...they don't have time!
Please do yourself a favor and look at the Health Page entitled "The Importance of a Timeline". This has invaluable information on how to break down your journal to something that a dr. can read without taking hours to do so. You need to break it down a bit and take out the babble and leave behind something a dr can scan and easily pick out the symptoms that you need him/her to see.
If you do this you will leave your appointment not only feeling like you did all you could to communicate your problems to the dr. but that you have left him/her with a concrete report of what the problems are and the dr. can't turn around and say that you didn't tell him/her something and use it as an excuse...trust me when I tell you that you have to be your own advocate! Don't wait around for the neuro to dig for answers, give them to him/her on a silver platter!
If after reading the article on the Health Page about doing a Timeline, just ask and one of us I am sure can help you ok? Best of luck with your appointment and I hope you get the results you are hoping for!
Lots of Hugs,
Rena
Please do yourself a favor and look at the Health Page entitled "The Importance of a Timeline". This has invaluable information on how to break down your journal to something that a dr. can read without taking hours to do so. You need to break it down a bit and take out the babble and leave behind something a dr can scan and easily pick out the symptoms that you need him/her to see.
If you do this you will leave your appointment not only feeling like you did all you could to communicate your problems to the dr. but that you have left him/her with a concrete report of what the problems are and the dr. can't turn around and say that you didn't tell him/her something and use it as an excuse...trust me when I tell you that you have to be your own advocate! Don't wait around for the neuro to dig for answers, give them to him/her on a silver platter!
If after reading the article on the Health Page about doing a Timeline, just ask and one of us I am sure can help you ok? Best of luck with your appointment and I hope you get the results you are hoping for!
Lots of Hugs,
Rena
Whatever you do, don't tell them that Lulu told you anything! The big doctors really don't want to know that you have been researching on your own - though it is silly of them to not recognize that the WWW has changed the way all of us view our medical care.
Let the neuro take the lead, listen attentively to the questions, follow the prompts and the wait to be asked. If at the end of the exam you have questions that were not addressed, by all means ask them. This is your chance - you don't want to have to wait months again to ask them. That's where writing things down is helpful - so you can quickly browse your list and see if there are any unanswered questions.
I hope the health page helped and you have a great first meeting .
my best,
Lulu
Let the neuro take the lead, listen attentively to the questions, follow the prompts and the wait to be asked. If at the end of the exam you have questions that were not addressed, by all means ask them. This is your chance - you don't want to have to wait months again to ask them. That's where writing things down is helpful - so you can quickly browse your list and see if there are any unanswered questions.
I hope the health page helped and you have a great first meeting .
my best,
Lulu
Welcome. The Neurologists I have seen like to do there thing first with exams and asking questions. Then I ask the questions I need. It is good to outline your concerns because it is easy to get nervous and forget. Shell is right be yourself.
They can tell a lot from the basic test they do which seem simple to us. Just from reflexes and such the could tell where my neurological damage was.
Good Luck,
Alex
They can tell a lot from the basic test they do which seem simple to us. Just from reflexes and such the could tell where my neurological damage was.
Good Luck,
Alex
Hi there,
I don't think we've met, a belated welcome to you.
Best advice is to just be yourself. The Dr. will perform an exam and ask you what has been going on. You shouldn't have to ask for specific tests.
Wishing you a thorough exam and good luck w/getting some input as you asked from the guys - ha/ha...as you know we're fairly woman dominated here and only the strongest of men survive...ha/ha
Seriously, we have a great few and hopefully they will see this.
Good luck to you,
shell
I don't think we've met, a belated welcome to you.
Best advice is to just be yourself. The Dr. will perform an exam and ask you what has been going on. You shouldn't have to ask for specific tests.
Wishing you a thorough exam and good luck w/getting some input as you asked from the guys - ha/ha...as you know we're fairly woman dominated here and only the strongest of men survive...ha/ha
Seriously, we have a great few and hopefully they will see this.
Good luck to you,
shell
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