What to expect?

[frustratedmomto3]

I have my first neurologist appointment on Tuesday and I was just wondering, what should I expect from the appointment? What will he be doing and asking? How is the best way to prepare so I can get the most out of this appointment? I have written down everything I can think of (all the symptoms I have been experiencing, how it has all progressed, and times in the past that I have had strange symptoms) and I am picking up my mri and ct scan films tomorrow so I can bring them, as well as the written reports. Is there anything else I should do?

Today has been a not so good day and I am glad my appointment is soon, but I know I won't have an answer right away. It's frustrating and frightening as my body seems to be betraying me. Just in the last few days I now struggle to use text messaging because my fingers don't want to cooperate and I now have to use a cane because my leg is also not cooperating. Only my right side is effected by all of this, which seems so strange to me. I don't know how much longer I can deal with the nerve pain that shoots down my leg, or the pins and needles feeling that wash over my arm and leg periodically, or the numbness in half my foot and half my knee....its all scaring me, especially as things seem to get worse every day. I'm sorry to ramble, but I'm the only parent my kids have (my daughters dad died and my son's dad abandoned them) and they are watching their mom get more and more sick.

Thanks for listening, and for any input you can give....
Chanelle

[frustratedmomto3]

Goodness no Quix, there was no offense taken! I was really just curious about it is all! I can see how that could happen and I understand why you would make that statement. :-) Pain and strange symptoms can be scary, and if they are not being taken seriously I could see how easy it would be to exaggerate things! I started to feel that way too but I had a doctor who sat down and reassured me that this was not thought to be "all in my head". That helped to make me feel better. Anyway, thanks for all your information and advice. I will let you know how things go tomorrow.
Chanelle

[Quixotic1]

Well, yes there are rare people that fake illness, but that was not what I was referring to.  Sometimes, if a person has terrible symptoms that the doctor does not seem to be appreciating, there might be a tendency to exagerate on the exam - just to impress on the doctor that this is a really serious problem.  It is most likely to occur with people who have had multiple doctors dismiss their suffering.

I always include this warning, if not for the person I'm talking to, for the many dozens that might read it.  I didn't mean any offense.

Quix

[frustratedmomto3]

Thank you so much for the great information. I like to know what to expect, but I have to ask....do people really try to fake things??? Who the heck would actually want to have these issues?? Anyway...
I went today and got a cd of my mri and ct scans that they took recently, as well as the written reports for my own record. They also faxed my medical records that are pertinent to the neurologist. I tried to get my own copy but they charge for them and I didn't have any money on me. I will have to go back for those. I have a question though that maybe someone can help shed some light on.

I was looking at my mri report and everything seemed to be focused on whether my spine was aligned or if there was any compressions or bulges. If they were looking for a pinched nerve or something when they did the mri, would they have have focused only on that and not looked at if there was anything else going on like lesions or looking at the white matter? It just seemed odd is all. The mri was of my spine and brain. I am not sure what strength the mri machine is.

Anyway, thanks again for the information and I will let you know how things go tomorrow!
Chanelle

[doublevision1]

you have gotten very good advice here.  The only thing I would add in general is that if you are not doing so already, start a file and be sure to get copies of all of your medical reports and test results, including copies of your MRI films.  This will all be very useful to have on hand if you are referred to various specialists as you go through the diagnostic process.  Offices have different practices and provinces/states have different laws around medical record retention.  Getting copies of your own medical information in a timely manner will ensure it is always accessible to you; you never know years down the road how helpful this may be.  At the conclusion of your appt tomorrow, ask the neuro or his assistant to be sure to cc you on his report.  Some specialists are reluctant to do so, for whatever reason; if this is the case, you should be able to get a copy from your GP/PCP, assuming this neuro follows up with them, which he should.

You may also want to consider asking this doc what his practices are around communication with patients. For instance, my GP phones me at home to follow up on important stuff; and has her staff call to let me know when tests come back normal; however my neuro has never taken a call from me nor returned one when I leave a message; I need to go through his nurses or, more effectively, through my GP to follow up with him on my behalf.  Some members here have neuros who actually communicate directly with them via email, which I think is great.  It is helpful to know this kind of stuff about him at the outset so you know what to expect from him in this regard.

Good luck tomorrow and keep us posted.

[Quixotic1]

Hi, Chanelle, and Welcome to the forum.  I know you have been here for a few days, but I missed you.

I read your previous post about the abdominal and leg pain and being treated for everything under the sun, that now they are thinking of things like MS and you are headed for your first neuro appointment.

At the first appointment the neuro should take a good history and get a handle on when everything happened, what tests were run and what the results were.  After that you should have a THOROUGH neuro exam which covers you from head to toe and takes a good bit of time.  Examples of the common things that are tested are:

Eye movements

Inside your eye exam

face, tongue and neck strength

muscle strength (neck, shoulders, upper arms, elbow, wrist, grasp, hip, knee, ankle, toes)

sensation of face, arms, legs - comparing one side to the other

tendon reflexes where they make your limbs jerk by stiking you with a little rubber hammer

watching your gait

coordination - touching nose to finger, sliding heel down other shin

balance

Make sure you do your best on all the tests.  They can tell if you are faking or not trying hard enough

Be honest about what you are not able to do anymore

==========

Then he/she will likely order an MRI of your spine if that wasn't done already.  There should be a whole raft of blood test to rule out many of the MS mimics.  He may request an LP (spinal tap) if the answer is not clear.  I recommend that people have the tap done by a radiologist with xray guidance - under fluoroscopy.  It makes it easier and less traumatic generally.

Do not let him suggest that because you are a single mom that this is just stress.  If he tries just tell him, "No.  I have been under really bad stress before and this is NOT how I react.  My tears or emotions are from fear of what is happening to me."

Most people do not get a diagnosis - of anything - on the first visit.  The docs usually need more information.  Try to be patient.  If possible have a friend who knows you go along.  When you are very upset, it can be hard to understand or remember all that is said.  Also a friend can verify that this is not just hysteria.

Then come back and tell us what went on.  We will try to help you through this.  We have all been there.  You will be alright.  And - if this is MS - what your brother-in-law goes through is not necessarily what you will go through.  Everybody is different.

Clearly you have been through bad times before.  You will make it through this whatever it is.  Fear of the unknown is far worse than knowing what you are dealing with.

Good luck, we will await your report tomorrow.

Quix

[frustratedmomto3]

Thank you Val, I will go look through the health pages. I am so scared. I have to take lots of deep breaths lately!

[Valerie64]

Hi Chanelle

I asked exactly the same thing a month ago when I had my first appointment, the Health pages have some really good advice for Dr and Neuro visits, I read through them and it helped me prepare - also helped me prepare for when the neuro climbed on the fence to sit until January when I go back...

You've got your symptom list and your MRI stuff ready so take a deep breath and I hope all goes well

good luck

Val x