More questions

[luvmyhubby]

Good morning,

I know I'm still new, and every day I think of something else.
My hubby stays up half the night reading but dosn't ask the questions(maybe not ready to) on our minds.
I'm sorry if this has been asked before, but here goes--What to expect at the first neuro appointment? Do we bring a list of symptoms, a timeline of events or will she just do a standard exam, tests and ask what she wants to know? We have waited a while for this so we want it to be as productive as possible.

I do appreciate all the info we have gathered here already, and thank you all for being willing to share your experiences.

 

[maryam_rastkar]

hey
my father's got the desease , -so that i can tell you what he did for his first appointment-
bring your frmer related test results - if you have any-
and you will have standard exams and tests then
she will ask what she wants to know ,
but it's better that you made a list of your symptoms before so that you'll be ready to answer each question
i hope you get better

 

[MarianneS]

Good morning luvmyhubby, what an endearing name. I feel the same way about my hubby too.

Are you just seeing the neuro or is it a clinic? I go to a clinic and there are several different people who come and see me, the neuro, physical, occupational, respiratory therapies, nutrionist, social worker and the ALS organization.

It is always good to bring in qestions or sysmptoms you are experiencing. I find that if I bring a list it enhances my memory. Otherwise I would recall a question when I got home or that person had left.

My husband goes with me too and it helps to have another set of ears and he writes down information from the tests they do, like breathing and strength. That way we can compare them to our last visit and have the "real" information. He also keeps my morale high, he is quite funny and makes me, and the staff, laugh. That lightens the visit which can be up to four hours long.

Good luck.

Marianne

 

[BrianD]

Well... I can share how my first appt went, and I'm sure others will chime in as well.

I expect she will do a thorough/precise neurological exam. I think the following link does a good job of going over the types of "tests" she will do.
The Precise Neurological Exam

So basically, she will be checking out all of your muscles and senses.

I'll point out I had most of these done... but not all, so there is some degree of differences there. I'll also point out that none of the tests were painful to any degree, so you should be able to relax about that.

You can expect her to order blood drawn for a series of blood tests to check for a host of other conditions that are detectable in that fashion.

YES... ask your questions! Remember this doctor is working for you, and you should feel welcome to answer any questions / concerns you might have. If they don't want to listen / answer your questions, then might want to consider finding a different doctor.

Now... what not to expect. Be prepared to not get a "final answer". This is likely just the first step in a series of tests and appointments. The outcome of your first exam will dictate the next steps... which often can be things like MRI and EMG types of tests. But be reassured that this is the normal sequence of events. The doctor is not really trying to hide things from you... they will just need more information to give you an accurate diagnosis.

Hope this helps!

Brian

 

[GlenBrittle]

Hey there LuvYourHubby,

I found it a time saver if the doc/neuro can read the information at the beginning of the appointment. The more information you can provide , means the less time will be spent on retesting , and more time on the purpose of the visit.

Glen

 

[luvmyhubby]

We are just seeing the neuro for first visit I guess she makes the determination if we need the clinic or not. All we know is his primary said he may need muscle biopsies and other tests that he does not do. So we have no atual "test" results to take to her. He forwarded our records and notes.

Thanks again for all the info.

 

[Katie C]

I would definitly bring your list of questions. I actually have a notebook that goes everywhere with me.. sometimes a question pops into my head someplace really weird and it's nice to be able to jot it down. Better to have it with you and this not be the appointment to ask them, then to not have it and have the neuro say "Do you have any questions?"

 

[Katie C]

OH... another thing... I am HORRIBLE with dates and time frames. Always have been. So I keep a large notebook next to my reading chair that's specifically for symptom changes.. I try to note date, time of day, what might have been going on. It really helps when the doc is looking to put a time frame on something.

 

[lisaann1170]

I like Katie's idea of a notebook! I started one for Dad a few weeks back. It's a good place to jot down questions that pop up in the wee hours of the morning. And, after so many visits to a neuro, speech therapist, OT, PT, etc, the notebook is now THE source of information.

Best to you!

 

[shelleynshaggy]

Same here - keep a notebook by your bed or in your purse jot down any changes, symptoms, etc. I also have a 3-ringed binder with all his medical records, test results, etc. Call the dept where your appt is and see what they recommend. Our "reminder" for the appt said to bring all test reports AND images with us. Luckily, most of them were done in the same system so we only have to bring the one CT exam and I already have all the reports in the binder. Jot down every question you can think of - and if you can bring an extra set of ears. Jim doesn't ask any questions at all and it has been almost 4 months since our journey began. His "denial" is actually a symptom called "anosognosia." In my husband's case it is due to his dementia. I also keep any relevent articles I find in the binder - it has helped with questions from friends and family. Not that I make everyone read the articles - but I have highlighted areas that pertain especially to the FTD - makes explanations easier.
Good luck to you.

 

[luvmyhubby]

Thanks everybody I am really starting to feel a little better as I am an organizer. Thanks Katie for the notebook idea and Shelleynshaggy for the three ringed binder idea. I had already told hubby we are gonna sit tonight and write our timeline and questions. I am truly one of those who likes everything neat and orderly, just helps me focus. Just wanna be ready when we get our appointment. And yes, we realize this may be a journey to get the answers we need, so we will remain positive and take each step and each day as it comes with all it's blessings and all it's trials! And thanks alot for the detailed description of the first appointment, that will help us plan much more effectively.

Oh, and I'm sorry that sometimes it takes me alittle while to get back with you all, we have a little bit of a hectic sschedule around here, as I'm sure many of you can relate to! But truly, thanks for all the help.

 

[Katie C]

No need to apologize... I'd be willing to go out on a limb and bet every single person on this board has "hectic" as a part of their day to day lives!