Questions for new neurologist

[Daisycat]

1. Is there a chance this could be anything else or CIS. (a second opinion is always a good thing)


2. How bad is drinking with this disease? (I have found some things saying it is helpful and some things saying it is not)


3. Do my two MRIs show any type of improvement? (Again I have read lesions can “heal” and go away)


4. What is your honest opinion of my long term prognosis? (I know this disease varies from person to person but I also know that even when they won’t say it Drs have an opinion on everything) – I know there are many factors that go into this as well, but just a basic opinion is something I need.


5. Could my insomnia be caused by a lesion? ( but then it goes back to that I have had insomnia since I can remember so I doubt I have had this for over 30 something years).


6. Related to question 5 how bad is using XYZ to get a good night’s sleep for this?



7. Is it worth me switching to a different medicine when I am stable on this one and a lot of the newer ones cause immune suppression? There is a Dr at one of the other locations that is having health issues where she has immune suppression and she is basically very limited in what they allow her to do.


I do not know all the details, but from what I have heard from the PM of that place she really can’t do much of anything. Maybe they are taking it to an extreme to be safe… but again I don’t know all the details so maybe there is something I don’t know. I know that PM is making any employee who is sneezing or coughing wear a mask the entire day so they don’t get her sick.


I wouldn’t want that much attention drawn to me. But if there is something better that doesn’t cause immune suppression I would be willing to talk to him about it. I would even be OK with having to take days off work since corporate is sending weekly emails to me about how I need to use some of my PTO before it goes away. (I have until July – no idea why they are getting this way this early about it)


8. How often will you want me to get MRIs – this is the least important question…. Mostly for my own benefit so I can know when I can start on my piercings on my right ear.


9. Do you think I am going to end up unable to walk/work sometime in the near future?

Does this sound like an excessive amount of questions for a first visit? Is there something more important I am leaving out? I actually have probably about 5 more but I don’t want the poor guy thinking I am crazy from one visit. I just have a lot of questions that have gone unanswered over the past year.

[marti]

No... this sounds perfectly reasonable. Keep making those lists and don't leave the office until he answers all of your questions. Some things might be very specific to you and your case, but if he's worth his salt he will address them all and do his best to give you good straight answers and some peace of mind.

After 17 years I still do this. I've been through a few different neuros. If they don't satisfy my mind, I'm off to a new one. Just remember that some questions can't be answered because of all the variables in MS and each individual patient. Your doctor isn't a wizard, but he or she surely has enough experience and knowledge that you should get some needed assurance.

Good luck. Go in there with a positive outlook.

[Seasha]

Good set of questions, Daisy. I would prioritize them in order of importance in case you run out of time. Also I would take down notes - sometimes there is so much info given out that you can read over later and not forget.

Good luck and be sure to let us know how it went

[pennstater]

Good list. Totally agree on the prioritization. You may not get trhu them all. I would also take a list of any Rx you take, as well as supplements and OTC meds, with the dosage and frequency on it.

You can let the neuro know that while diagnosed a year, you weren't able to get questions answered, so you have many and not having discussions exasperated your fears. Ask him that if you can't get all answered this visit, or you wind up with more questions after absorbing your visit, how does he want you to proceed and communicate with him?

While your posts seem like your anxiety has calmed some, make sure he knows how you have struggled with depression and anxiety. It is important for him to understand, as some meds can contribute to depression and anxiety. Plus, for him to help, he has to fully understand your fears and the extent of the highs and lows.

I would also want to leave with an understanding of next steps/treatment plan, additional testing, how often he wants to see you, etc... My first neuro saw me every 3 months the first year, every 4 the second, then every 6 months. It was more so he could see how I was handling diagnosis and give me a chance to ask questions. Maybe that is an option.

Lots of luck. Looks like you gave lots of careful consideration to what you need out of your appointment .

One final thought. Make sure your medical records were transferred or that you have copies of the MRI, blood test results, and any test the hospital/neuro did. He needs this to answer your #1.

[Daisycat]

I am hoping this one is decent. I don't see him for about three more weeks , but I want to make sure I have everything I plan to ask him ready. There are a few I can leave out if I run out of time but after driving myself crazy with Dr google over the past year, I want to be able to talk to a real Dr about this.

Also want to ask him about the if fasting is something that helps with this. I heard that about a year ago but I also found things that said the opposite. I know there was a thread here that mentioned fasting being helpful so I figured I could ask him about that too. I'll probably try to pick out my 5 most important questions but hopefully he can get to all of them.

[Daisycat]

One final thought. Make sure your medical records were transferred or that you have copies of the MRI, blood test results, and any test the hospital/neuro did. He needs this to answer your #1.

They faxed over all my old records to my new Dr and I have a CD with a copy of both my MRIs on it that I was told to bring to my appointment. I am probably going to take it by there next week since I am losing my ability to resist looking at it.

[sarabeach123]

Also want to ask him about the if fasting is something that helps with this. I heard that about a year ago but I also found things that said the opposite. I know there was a thread here that mentioned fasting being helpful so I figured I could ask him about that too. I'll probably try to pick out my 5 most important questions but hopefully he can get to all of them.

There's a very slim chance that a neurologist will have much interest in functional medicine. It's worth asking, but I just don't want you to get too discouraged if the reaction is negative! I wish more neurologists, and doctors in general, were more interested in treating the whole body, but that's not usually the case. If you find a neurologist who is even willing to listen to you mention using nutrition as a form of treatment, you will have found someone very unique indeed!

[Jules A]

Yes it sounds excessive to me. They have such a limited amount of time I would try not only to narrow them down a little and allow time for him to do a thorough exam on you without a barrage of never ending questions.

1. Is there a chance this could be anything else or CIS. (a second opinion is always a good thing)
Great question if you are willing to accept his answer. If not waste of both your time. :

2. How bad is drinking with this disease? (I have found some things saying it is helpful and some things saying it is not)
Really? Excessive ETOH isn't good for anyone you don't need a $200 an hour MS specialist to answer this question and trust me it will waste time and make you look like you have SUD.

3. Do my two MRIs show any type of improvement? (Again I have read lesions can “heal” and go away)
I'd be more concerned with whether they show an increase and think that would be a better way to frame basically the same question.

4. What is your honest opinion of my long term prognosis? (I know this disease varies from person to person but I also know that even when they won’t say it Drs have an opinion on everything) – I know there are many factors that go into this as well, but just a basic opinion is something I need.

Reasonable but don't expect a firm answer because there is not one.

5. Could my insomnia be caused by a lesion? ( but then it goes back to that I have had insomnia since I can remember so I doubt I have had this for over 30 something years).
If you have extra time this and 6 would be ok to ask but I doubt a lesion is causing insomnia. Without attempting to diagnose anyone I always wonder about trauma or ADHD with reports of chronic insomnia dating back to childhood.

6. Related to question 5 how bad is using XYZ to get a good night’s sleep for this?
If its something addicting like a benzo or benzo-lite hopefully he will tell you they should be used sparingly if at all and not with ETOH.

7. Is it worth me switching to a different medicine when I am stable on this one and a lot of the newer ones cause immune suppression?
Great question, my MS specialist said no because I have been stable so long. I'm on Copaxone also

8. How often will you want me to get MRIs – this is the least important question…. Mostly for my own benefit so I can know when I can start on my piercings on my right ear.
Perfectly acceptable question which he will probably discuss without you asking so I'd let him lead on this.

9. Do you think I am going to end up unable to walk/work sometime in the near future?
Worth asking but add this to #4 and again the truth is no one knows for sure.

Try not to let yourself get too amped up so you can get a feel for his style and give him the opportunity to do his job. I'm crossing my fingers this one is a good fit and makes you feel heard. Do keep in mind he doesn't have a long time to spend with every patient so being concise is not only efficient but reduces the chances of him thinking its mostly a psychiatric issue. Good luck!

[Daisycat]

My pcp needs to just become a neurologist. He’s been answering my questions as best as he can and has even looked up stuff when he doesn’t know.

I try not to ask him that many questions though.


Jules
1. I can as long as his answer isn’t CIS doesn’t exist.

2. I don’t mean my 2 bottle a night habit. I mean a glass or two every few nights.

3. I know there was no growth in any of them. I got that from the MRI report. That’s all I got.

4. I know it’s varies but DRs always have a guess. Patients deserve to know it if they really want to know.

5 and 6 are two of my lower priority ones so I agree with you.

7. I am hoping for no as well. I am happy with copaxone.

8. You are probably right about this one. Hopefully not for awhile at least.


9. It would make it so much easier if there was a way to know for sure. The uncertainty makes it so much harder.


I just hope this one is decent. I’ll be happy if I can get half my questions answered.

[Daisycat]

As for it being excessive I haven’t had a real dr for this in over a year so I have a years worth of questions to get through.

And if his exam is anything like my last drs it last 2 minutes.

[Daisycat]

Is there a chance this could be anything else or CIS.

Do my two MRIs show any type of improvement?

What is your honest opinion of my long term prognosis?

Is it worth me switching to a different medicine when I am stable on this one and a lot of the newer ones cause immune suppression?


Do you think I am going to end up unable to walk/work sometime in the near future?

These are my five most important. I know that Drs will say how variable this disease is and to a point that is true , but if they have been doing this for awhile they will have an opinion about how it will turn out. I don't mean I need to know that in exactly 5 years, 17 days and 4 seconds you will be using a cane. I just want a general idea of what he would think I should expect progression wise.

[Jules A]

1. I can as long as his answer isn’t CIS doesn’t exist.

So I'd suspect your other physician meant he doesn't believe it holds out over the long term which is my opinion also. Of course it exists as a diagnosis whether anyone actually has only one event that meets all the criteria for MS with no recurrence or progression I doubt it but thats just my opinion in a specialty I feel tends to be fraught with denial and diluted realities.

FWIW I believe current recommendations for female etoh is no more than 1 drink per night per week? So 1-2 glasses a couple of times a night probably isn't an issue but wouldn't be a bad question to ask if you are concerned and your PCP hasn't answered it. Tobacco is the biggie that I've read studies indicating as detrimental to MS in addition to all the other health issues. Someone correct me if I'm wrong.

As for it being excessive I haven’t had a real dr for this in over a year so I have a years worth of questions to get through. And if his exam is anything like my last drs it last 2 minutes.

Hopefully he does a thorough exam I think 15-20 minutes for recheck and 20-30+- minutes for initial evaluation is fairly common. Consider keeping the "real dr" thoughts to yourself and not unloading an entire years worth of agnst on the dude.

Sending good vibes that this one is as nice as your PCP. Good luck Daisycat!

[ladybug162]

I don’t think your questions are too excessive. You should ask all you can. That’s part of a doctors job. All of your questions may not get answered for whatever reason....but I really hope they do and you come away with the answers you’re looking for. I believe they are totally legit questions.

I always totally freeze up at my appointments. I either forget what I want to ask, start to think they aren’t important questions or just silly...other times I just feel rushed and like I’m already taking up too much of his time so no need to ask questions. I also lie about my symptoms. I’m not quite sure why I do this. As I know it sounds stupid. Like every time I’m asked if I get depressed, the answer is always no. Which is a lie. Maybe I’m just embarrassed by it...I don’t know. Can’t think of a better reason.

[IntoDust]

I don't think this list is excessive at all. I believe that you've said in the past that your appointment is scheduled for an hour. If this is correct, that leaves more than enough time for him to review your scans, do a detailed neurologist exam and answer these.

1. Is there a chance this could be anything else or CIS. (a second opinion is always a good thing)
This is the single most important question you need to ask - mainly to put your mind at ease or help you come to accept the diagnosis.

2. How bad is drinking with this disease? (I have found some things saying it is helpful and some things saying it is not)
I think this question is perfectly reasonable. It will not raise a red flag about your drinking habits. Chances are, if you're an adult in your mid-thirties you're gonna have a few drinks now and then.

3. Do my two MRIs show any type of improvement? (Again I have read lesions can “heal” and go away)
Disappearing lesions do not always mean an area has healed. The brain can remyelinate to a degree but it does not mean that the disease is getting better. More importantly, you want to know if your MRI is stable compared to the last one and you already know that it is. You can ask this question but the answer doesn't really matter. Lesions can appear and disappear but the disease can progress independently of visible lesions. Remember, there is no cure... only remission.
Maybe a better question to ask is: At what point can we consider the medication to be successful in controlling the disease?

4. What is your honest opinion of my long term prognosis? (I know this disease varies from person to person but I also know that even when they won’t say it Drs have an opinion on everything) – I know there are many factors that go into this as well, but just a basic opinion is something I need.
Don't get your hopes up that you will get anything more than a shrug for an answer.

5. Could my insomnia be caused by a lesion? ( but then it goes back to that I have had insomnia since I can remember so I doubt I have had this for over 30 something years).
I think you already know the answer to this.

6. Related to question 5 how bad is using XYZ to get a good night’s sleep for this?
In the name of full disclosure, please include a full list of all of your medication and the supplements you're taking with the doses. I can not stress this enough. If patient's were honest about everything they were taking and told the truth about the amounts they took them in, it would save doctors a lot of time and headache in trying to figure out what was happening to their patient.

7. Is it worth me switching to a different medicine when I am stable on this one and a lot of the newer ones cause immune suppression? There is a Dr at one of the other locations that is having health issues where she has immune suppression and she is basically very limited in what they allow her to do.
Fair question

8. How often will you want me to get MRIs – this is the least important question…. Mostly for my own benefit so I can know when I can start on my piercings on my right ear.'
I think everyone asks this. They'll probably tell you without you having to ask.

9. Do you think I am going to end up unable to walk/work sometime in the near future?
You're putting your doctor in an impossible situation by asking him to answer this.

[Daisycat]

Jules –


His exact words were “Tell patient that CIS is not a real disease”. I looked back in my patient records and I found that one. I don’t know what he meant by it because I had already started to get annoyed with him at that point so I never brought it up.


I have heard that smoking is bad so I have done my best to not have any. I have had 3 I think in the past year. That is a lot better than what I was doing so I think that is progress. 20-30 minutes for an exam. I can’t even think of what all that could involve. My usual one involved squeeze my finger and follow my finger and don’t let me push your knee down. That was all it ever included.



Ladybug-


I am going to redo my list and rank them in order of importance. Some I am OK with not getting an answer for at this visit, but there are a few I need answered. When I get asked if I am depressed I think I always tell them only because if this disease and they never talk about it anymore. The nurse spends more time with me than the Dr did.



I just need an honest answer about what he thinks my long term prognosis is. No matter what a Dr will tell you they always have an opinion (even if it is wrong). Not knowing is stressing me out way too much.