Question you should ask your Neurologist?

[4rhl1981]

For those that have seen a Neurologist(s), what question should you be asking during the exam, what types of thing would you bring to the exam? What should the neurologist be asking or doing, what can you expect from the exam? I ask not just for myself, but feel with the cooperation of this forum we will help prepare others whom may need to see a neurologist, giving them the knowledge and preparing others for what to expect for an initial exam. Thank you all.

 

[mndireland]

It really depends on what you want to know or hear. If you have already had a diagnosed, then the first question seems to be, how long have I got left.
I think the best answer you can get from this is from the FVC tests. At the end of this disease, now matter how long you have it or where it started it seems, once this awful disease gets into the lungs that is when it becomes fatal. If you have no breathing difficulty, Great! But as you get the fvc results and you watch them go down on each visit, I think you can more or less see whats happening for yourself.
Although colds and lung infections can also be fatal as the lungs can become too weak to cope.
One thing the neurologist told us is that my mom has a very rapid progression. I asked could this slow down and stop for a while and her simple answer was no. This disease goes at a pace and that pace wont slow or stop, so if she is unlucky that it is rapid, it will continue like this.
Hope this helps!

 

[CindyM]

I prepare by reading all I can. More than one doctor has said it is nice to discuss illness with a patient who is informed. (Not bossy. I would hate to tell them how to do their job.)

I also write down any questions I have and any concerns I have. I don't want to wast time by leaving out important topics.

And it helps to bring someone along. Two sets of ears are better than one, IMO.

 

[tmasters]

Everything Cindy said.

Another reason to bring along a friend or relative: the doctor will be more forthcoming with information if he knows you have support. At least one other PALS on this forum has reported a lack of receiving a diagnosis only because she went to the appt alone.

Ask for a copy of the summary report and of all test results. Anything you don't understand and forget to ask about can be brought up later here. But I've gotten the summary report a week later in the mail and thought to myself: "really, why didn't he just tell me that?".

If pre-diagnosed:
Ask him what alternative (differential) diagnosis he is considering, and what tests can rule those things out. Ask him what is the next step. Ask which symptoms support his primary diagnosis and which point away from it.

-Tom

 

[4rhl1981]

Thank you TMasters and all else who responded. Anything I should bring like previous test result, any other questions I should present? Thanks again.

 

[katekath]

Wow...thanks for starting this thread. My mum will be seeing her neuro after seeing her ENT specialist (hopefully soon). So this will definitely be helpful.

Since my mum has already been diagnosed (MRI, CT scans and all other tests point to ALS, all others ruled out) and is currently in a rehab hospital, I would probably ask about the following:

ALS issue
1. How physio can help from the neuro's perspective.
2. Why they took her off the bipap when CO2 is/can be an issue (she has a trach).
3. Can FVC tests be done for her even with a trach?
4. What other tests do they plan to do along her progression

Phlegm issue
1. She has a lot of phlegm, so is there anything else besides oral medication they can prescribe to help reduce the amt or make my mum more comfortable?
2. What can lead to the large amt of phlegm, besides infections

Just for info: My mum has a trach, a lot of phlegm, was on bipap then weaned off, weakness/ loss of muscles started from right hand, has weaken diaphragm, left hand and both legs showing signs of weakness now, both hands are esp weak/shakes terribly

I am particularly bothered about the phlegm issues as I read that it was supposed to decrease with time after getting a trach. Hopefully, I can get more info on this to share.