My first appointment with a Neuro is this Friday. I keep trying to arrange things in my brain to help him make sense of it all. I'm having a hard time thinking what I can tell him in the that small span of an office visit? I've decided not to bring my old records since all the blood work and CT scans are fairly old, dating back to 2003. The most recent tests were for cholesterol, and my history of ovarian cysts. I doubt this info would be pertinent..lol
So, should I just sum it up with basic symptoms and then date back to the most recent attack? This is really frustrating to try to present this in the proper way so he knows what I'm going through. I've heard the advice in the past about bringing a list, but I don't think he'd have enough time to go down that one. They do have some of my history on file from 2005 when I had my gallbladder surgery. What do you all think?
I know how you feel. I have no memory at all and as soon as my doc walks in the everything I wanted to talk to him about walks out of my head. So my dh started making me a list and he comes with me to all of my visits just to be my other brain, you know, the one that HAS the memory
As far as your medical records, he can get what he needs himself. Don't stress yourself about all of that, that's why he has an office staff. Main things you want to remember is to take a list of all your meds, a list of all your other doctors, with phone numbers, and a list of all symptoms you've been having, no matter how small or weird they may be, list them and take that list with you.
I think the biggest complaint doctors have about their patients is either flat about being lied to or things being omitted. Sorry, I don't mean to come across harsh. I guess what I'm trying to say is tell your doctor everything even if it's seems irrelevant. Something you never would have thought was related to a neurological problem could very well be so worst thing that can happen is he or she tells you it's not important and moves on. Don't ever worry about whether or not your doctor has enough time to look at a list. I think doctors prefer lists. It's something that can be filed away in your chart to be referenced to at any time and I would even suggest you keep that same list somewhere where you can add to it as needed.
A good doctor will always have time for your needs and is there for you not the other way around.
Well, the good news is that you have already learned so much here of what might be relevant.
First, you will be filling out paperwork as a new patient that will include history so there will be no need to mention certain things verbally. They do differ from doctor to doctor so if you see anything "missing" you can certainly add that to your list of things to talk about -- IF they're potentially relevant, nuerologically speaking.
Remember the rules of journalism they teach in school? How, what, where and when? I would list as succinctly as possible and also categorize my symptoms so you're not all over the place. Like cognitive, physical, etc. under separate headings and list what you're experiencing, for how long (if you know), if you notice it happening AT any particular time, etc.
I think that being succinct and not all over the place is the easiest way for a new doctor to get a good picture. You may not winding up sharing everything but even for yourself, if your notes are organized you'll probably get the the most out of the visit.
I started a list a month ago on my computer, but you're so right. I forget to add to it when things are happening. I usually am so busy with the house or the kids that I just keep on truckin' till they are in bed. By that time all I can think of is sleep..lol Thanks also for letting me know about the records. I don't drive and you know how the offices work. If you don't have a release signed in person they don't fax it to other offices. My doc is at Loyola, so when I had my surgery there they just made me sign a release and got what they needed. I just want Friday to be here already so I can get this over with.
Write a generalized list of symptoms,when they started,how long they lasted and so forth.
Being nervous and getting white coat syndrome is very normal and expected.
Usually at a neuro's office when you fill out patient information they have a wide range of a symptoms list,just go through and check the ones that pertain to you.They usually have space available to describe each symptom.
I've been to 4 neuro's and they seem to use basically standard forms.
Take your list with you for your reference and don't leave anything out,even small deals will help the DR.
I understand now. I thought you'd have to go with this big laundry list and pray he'd have time to hear it all..lol I sure hope the history form is more detailed than the ophthamologist. He had like 6 symptoms on there and that was it. I feel like I'm applying to college. This is insane..lol
Just to show you how slow I am - I just realized when you post you can scroll down to see everyone's replies. Before then I used to have to flip back to remember what was said. DUH!
Do bring your list. Even if the neuro doesn't look (which he should) you'll have it for yourself. Everytime I went to the neuro I could tell him about some symptoms but would completely forget about others. He did ask direct questions which helped but everytime I would walk into the office thinking 'don't forget to tell him about the spasms', and each time I walked out without telling!
Write down any questions you have too.
Best of luck with the appointment. Let us know how it goes.
Hi ya buddy! Lisa, I think this was a wise thing to ask about, and I think you got some solid answers. Unfortunately, not all Specialists take the time to really READ anything you have or REFLECT on what you say...many of them chalk up much of their first immediate dx to what THEY SEE.
ITS REALLY IMPORTANT that YOU have a list, choronologically listing what you have been going thru. It doesnt have to be EXACT- it should be like from Jan-Feb, tingling in left hand, still have it but not as bad. FROM March 07-now, left foot seems to drag. In APRIL 07- experienced eye issues, saw Opth in June 07 and he felt that it wasnt optical neuritis, wants a follow up in 3 months...that sort of thing. YOU are going to give the nurse, or the doctor your history. They are NOT going to read your laundry list of "complaints". (I Say that with a smile, ok?). They WILL give you a full evaluation to decide where to go, and if you do have any notes, films, results, etc you should bring them....save the doctor time by having whatever you have WITH YOU.
Make copies before you get there, so you can leave them....dont leave originals. If you only have original MRIs or FIlms, he will have to look at them while you are there, dont leave them but make copies of the reports if you have them.
Its really normal to be nervous and believe me, I was scared to death. I was way beyond nervous by the time I saw the MS doc....but this is a good starting place to start pulling together all of your sytmpoms and get some direction. We are all waiting to hear from you....know that you are not alone..we will all be with you in spirit. Ok??
I tell/told my neuro everything, well everything that I could remember, it wasn't until about a year after being dx'd that I mentioned the numbness when I tilt my head foward L'hermittes which is a ms symptom, so here I had a classic symptom and forgot to tell him
I like the list idea and for the 1st year after dx I kept a journal everyday, just wrote how I felt, what I did, what I ate, trying to find a pattern and it was very helpful
I tell my providers everything, why hold back info from a person who is trying to diagnose you, they can't tell anyone it is confidential I had MRI'S taken in 1995 and I wish I still had the copies because it would be a comparison from then to my scans now, I would take anything and everything to the neuro let them decide what is necessary and what is not
and maybe you want to bring a tape recorder to record what is said so you will remember, you may feel silly but 3 days later you will be glad you taped the visit
First off Nikki, wow, you sound really perky and well today. I hope your sugar buzz doesn't keep you up all nite. Ok, I'll stop with the smilies..lol Funny you should mention the chronological listing. I was just doing that today. It was very interesting to see that even back in 2002 I had pretty much the same symptoms, and I would have attacks twice a year (In the winter and right before summer). I am pretty nervous, but not scared to death just yet. I'll probably feel that way when I walk into his office. *eeekk*
I really appreciate your input since you have been through the gammit of MS. You are truly amazing gurly!
I have had many tests over the years. Mostly just CT scans, bloodwork, ekg's and ultrasounds. The problem is at the time when I first got sick I had swaollen lymph nodes and all the doctors were thinking cancer, and those cme out negative. So, I think a Neuro wouldn't be helped by any of these results. However, if he does mention tests I've already had I'll be sure to tell him .
I agree that it's a good idea to tell your doc everything, but at the same time I wouldn't tell him about endometriosis and ovarian cysts (Ugggh, which btw is giving me major pain tonight!). I do think what ever is a consistent symtom should be addressed if it's in his field of expertise. I just don't want to go in there and sound all hyper and crazed running down the list. I've had my fair share of specialists and whenever I just spewed out things I was feeling they would immediately say "oh, you sound like you have alot of anxiety. This could be the problem". I want to be taken seriously, and not dismissed as a hypochondriac.lol I know the difference between being anxiety ridden and waking up one morning and falling out of bed cuz my leg won't move! But, I totally hear ya, and I will keep all your advice in mind.
Everyone here has just been so great and supportive I wish I could take you with me when I go. Right now I'm just trying to figure out how to get there by 10:15 and make sure someone is here for my son's bus at 12:30pm. As some of you know my biggest problem is anyone taking care of him since he has the autism. That right there is gonna be a bit of a distraction, but I'll do my best to stay focused. One other thing I wondered is if caffeine would effect his testing? I usually only have one large cup each morning, but I don't get jittery, just a little more energetic. Maybe I should skip it that day?
Well, one more day and I'll be there. So, I will definitely keep everyone posted about what he says.
Tell your neuro EVERYTHING!!!!!!!!!!!Including the endo,the ovarian cysts,swollen lymph nodes.
Going in there and being vague is not gonna help your neuro.Girl friend your paying the Neuro top dollars , lay it all on the line.
My GP tells me all the time I'm to vague in explaining ,he said its like using a pry bar to get to the symptoms.I had seen him the other day fot UTI,he ask me what made me that I had a UTI,I wasn't vague them,I told him it burned when I Peed,he looked at me and grinned and stated at least I got to the point.Has to be the steroids.
I never initially told the neuro about little things,bladder problems,ringing in the ears,back spasms.I left a lot of little things out as I didn't think they were important but they were.
Coffee shouldn't bother your exam.Don't let this neuro make nervous which is hard.Goodluck with your appointment.If I was there I'd go with ya!
How are you feeling this morning dear? You're another expert on this board. I swear they should start putting some of you on the payroll. I'm sooo glad I asked this question. At first I thought it was a silly one to ask, but like you said you're paying the smart dude to figure this all out. One of my favorite shows is House M.D. I take pointers from that one as well..lol
I just have another wacky symptom to add to my list too. I was taking a shower this morning and the water felt warm on the top of my body, but cold on my left leg, crazy ha? Ok, so I'm learning alot here and I'll be sure to include EVERYTHING, just like you said.
With MS the normalicy has left.I don't remember what normal even was.
I can relate to the odd sensations.If I put an ice pack on the bottom of my left foot the right one goes numb and visa versa.Ya talk about screwed up wiring.
I'm doing good this morning,trying to recover from spastic leg muscles,I swear these steroids like to mess with my legs.Everytime I take them my legs go spastic wacky.And the anti-spasmatic meds don't provide much releive during these attacks.
The physical therapist ask me yesterday if I felt my right leg was longer than my left? I wear a full right leg brace to keep that leg going in the right direction.The left leg ain't shorter the muscles are pulled so d*** tight behind the knee cap I can't straighten the left leg all the way out.I hate paying idiots good money for stupidity.
I know I pay the pharmacist house payment each month(lol).
Make sure you write down your new symptom as odd or as bizzare as it sounds.
I haven't found normal since I've been born. If you find him let him know I'd like to meet him..lol That's so weird about your foot thing, but if you think about accupuncture, and reflexology alot of the connections to one area of your body can be felt in other places. This is why we get such strange sensations while doing typical daily things I guess. As far as your meds and legs it's a wonder you aren't walking backwards or on your hands..lol I am so bad with meds. I get sick on the most basic of things. I broke down today and took some motrin. My doc doesn't like me taking it much cuz it raises my blood pressure, but pain raises it even worse, so I guess it's about the same.
My husband took off work tomorrow so I could go, which I'm shocked about! However, he did say he was "dumping me off", and probably going to lunch while I'm in there. He's so sensitive, ha?..lol I was telling him about what I think might be going on with me last nite, and he was very quiet. When he gets quiet I know I'm in trouble because then he knows he's screwed and probably starts thinking he should begin looking for that Russian bride site on the internet..
Well, I guess I'm off to clean this stye of a house. I clean more than most merry maids and by the next day my family has destroyed all my efforts. Hope your legs feel better soon!!
Lisa - GOOD LUCK with your appointment tomorrow!! I hope that you get some answers and some direction and some peace. My husband does not want to discuss any of my symptoms with me. He is waiting until we know what is wrong and will deal with it then. From what I have been reading on these boards it could be a LONG wait, a LOOOOONG wait! A lot of us will be thinking of you tomorrow and eagerly awaiting your post.
I just hope this isn't another dead end. I am not sure if lesions show up several weeks after an attack or not. I guess this is the frustrating part of getting a dx. Thanks to you guys on here it helps lower the frustration.
Hi lisa. Just wanted you to know Ill be thinking of you too. Youll be on my mind, so write when you can.
You mentioned legions and whether or not they show up. A real honest to God MS Legion, will show up for quite some time, usually forever on an MRI image. However, if it is done with contrast- then it will be GLOWING if it is active, usually while the relapse is happening, or shortly before and after....but it wont glow, just show up as a white mark if it is NOT active, but has formed. Remember, legions, are scar tissue. Yes, they can go away, but with MS, its rare that they do. HOwever, migrane related legions usually do go away with time..
does that help?
Just know youve got the support of lots of us here, no matter what happens, we are rooting for you to get answers!
Good luck tomorrow,I'd hog tie that hubby of yours and drag his hiney into that neuro's office .If this is MS he needs to be well informed and he needs to understand the DX process.
Thats okay when I was admitted to the hospital back in march,scheduled for solu-medrol infusion because of an attack,my hubby dropped me off like a pound hound at an animal shelter.
I think I'd get farther by walking on my hands.My legs are worsening and it happens everytime they do steroids,mussle loss.I went today to see my electro-muscular Dr who takes great care of my muscles because the physical therapist wants me to do PT without the leg brace.It keeps me stable and able to stand.
Well now I have a floppy left foot that flip flops when I walk.It slaps the ground like I have swimming feet fins on.So now a AFO for the left foot.But least that will be below the knee.The orthodic DR wants to redo the right full leg brace that will be easier to wear,instead of the support being behind the thigh it will be in front which will rebuild the hip muscles and thigh,instead of hinges at the knee,there's springs so theres less shock on the low back.This leg brace was awesome.Now its just getting my insurance to aprove it.
I joined a fitness center with my son to try to regain some muscle,its frustrating because my MS wants to attack my legs and its starting to irk me.My electro-muscular DR said today that another attack anytime soon could finish my legs off.With being said,I joined the gym and its owned by a chiropractor so he's gonna set up a slow program and we'll build up to it.
Be straight and up front with your neuro.I'll be thinking about ya.
I was gonna whine about how things were so rotten here tonight, but after your post I have no room to complain. I know everyone talks about how great your attitude is, but really you don't have a choice. I bet some days you just wish you could just have one day when you wouldn't have to worry about MS. This board has taught me so much about life in general, about personal strength, and also about living for TODAY. No matter what the Neuro tells me - tomorrow I'm gonna try harder to look to a better life. No more getting sad and depressed about my marriage or stressing out about the kids (ok, maybe that one is impossible), or worrying if I can do this or that. I'm just gonna really make a conscious effort to live more in the moment. Ya know pain and illness can really put you in a funk. I have felt this way for months... years even. Then I see you, and Nikki, and KT, and everyone else that gets up each day and goes to work, takes care of a home, and has a life. You all are truly an inspiration, and tomorrow I will feel stronger because of all of you.