First consultation with neurologist

Posted by birdman518 @birdman518, Jan 17 8:52am

Hey all,

I have my very first consultation tomorrow with a neurologist. This is about what I think I have: cervical radiculopathy, or in any event I have nerve pain from my shoulder down my arm and numbness in my hand.. mostly thumb and index finger. I also have some unsteadiness in my walking and balance sometimes and have fallen 3 times in the last 6 weeks or so.

But my question is not about my symptoms.

I have health insurance through Florida Blue (an ACA plan) which has an $8000 out of pocket. I am 64 and will start on Medicare using a supplement plan G.

3 weeks ago, my wife had to go to the ER for something (about 3 hours and all is ok) and we believe we will be getting a bill for over $4000.

You can probably see where I am going with this. It seems like if I waited for any major diagnostic tests or treatment until after I am on Medicare I would be much better off with respect to. my out of pocket expenditures.

Would it be reasonable for my first visit to explain that I would like to try something like the cortisone shot before moving on to anything more expensive?
Obviously when I set up this appointment I did not know about the ER bill.

If it were not for having fallen, I would probably have postponed this appointment until after May, as the rest of my symptoms have been present for a couple of years, although they have worsened lately.

Any thoughts or advice would be greatly appreciated.

First I would say yes to the wait until medicare….however if you need the treatment now, I would suggest that you look into a patient assistance program at your place of medical treatment, like the hospital where you used the ER, I am on medicare and would not be able to get the treatment I need without it. I did have some large copays also and I thought I would never get any assistance from the patient program but I am really glad that I gave it a shot, and they did help with all the leftover co pays…..ask if they have an patient assistance program and pursue it..I think you will be surprised. I also applied for assistance from the drug manufacture for my blood thinners and wow…..they have supplied me with all the blood thinners now for 3 years….for a total of about 4k per year….good luck and I hope this helps you get the care you need.

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@starfirey2k

First I would say yes to the wait until medicare….however if you need the treatment now, I would suggest that you look into a patient assistance program at your place of medical treatment, like the hospital where you used the ER, I am on medicare and would not be able to get the treatment I need without it. I did have some large copays also and I thought I would never get any assistance from the patient program but I am really glad that I gave it a shot, and they did help with all the leftover co pays…..ask if they have an patient assistance program and pursue it..I think you will be surprised. I also applied for assistance from the drug manufacture for my blood thinners and wow…..they have supplied me with all the blood thinners now for 3 years….for a total of about 4k per year….good luck and I hope this helps you get the care you need.

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Thanks for the advice. I will look into it. I would rather not wait but I since my OOP max resets this year, I could end up with a huge amount with my wife's bill already.

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I have a suggestion…As you know muscles and nerves are connected… I have all those pain areas and have gone to about 30 doctors in the last ten years and nothing but pain meds have been given me.. I am finding some relief now by a physical therapist who uses Dry Needling..(Look it up) he inserts needles into each group of muscles (one day for each area).. then once he locates the offending muscle (pain causing, knotted muscle), the next treatment he uses a TENS unit to give that muscle a little massage, loosening it up. With a few days, the pain is less in the spot. After it is painfree, he plans to teach me how to keep the muscles relaxed. Not acupuncture, not chiropractic, which only minimally comfort the muscles, but this targets the muscles deeply. Hope you check it out.

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@maryflorida

I have a suggestion…As you know muscles and nerves are connected… I have all those pain areas and have gone to about 30 doctors in the last ten years and nothing but pain meds have been given me.. I am finding some relief now by a physical therapist who uses Dry Needling..(Look it up) he inserts needles into each group of muscles (one day for each area).. then once he locates the offending muscle (pain causing, knotted muscle), the next treatment he uses a TENS unit to give that muscle a little massage, loosening it up. With a few days, the pain is less in the spot. After it is painfree, he plans to teach me how to keep the muscles relaxed. Not acupuncture, not chiropractic, which only minimally comfort the muscles, but this targets the muscles deeply. Hope you check it out.

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Thanks Mary. I have to admit that after doing a lot of Internet searches, I have not found much that is encouraging for this kind of problem. Still, one has to start somewhere!

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Post appointment followup. Me Dr yesterday.. he did a pretty comprehensive physical test for my affected areas.. he agreed that it looks like my own diagnosis of cervicular radiculopathy was correct, but he said that it looks like (and I agree) that I may have some ulnar nerve compression, and my hand numbness and tingling extends to my pinky and ring fingers. He said that I probably have at least *some* lumbar nerve issues that may be related to my unsteadiness and falling.

Until I go on Medicare in May, we are going to try some neck and back stretches and exercises, which I think is good. I have to see if my pacemaker is MRI compatible or not, for imaging going forward.

Although I am sometimes skeptical of these "PT" type of approaches, I am going to stick with this regimen and give it a shot.

Obviously, he said if anything changes for the worse I will see him again.

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I am going back for my first "real" consultation with my neurologist soon. My first visit didn't really count because we agreed to wait until my Medicare coverage started May 1. He did recommend some stretching which I performed reliably for at least 6 weeks, but I could not see any help at all… sometimes I felt worse.

My symptoms are daily pain and numbness from my neck down to my right thumb and index finger… BUT many days it involves my whole arm. I have pretty bad right shoulder pain. I have also developed left shoulder pain. Less commonly, I feel tingling in my left big toe… sometimes in the right as well.

Finally, I have stability issues. I have fallen a few times, and am often unsteady. I am certain this is not heart related… there has been no dizziness. It always feels muscular.

I guess it is almost certain I have a C6-C7 type of PN.. but there could be more going on given my other symptoms.

So I am looking for what to expect now. I expected he would want to order an MRI but his nurse told me he would not (I have a pacemaker so I inquired about getting info from my cardiologist).

Are my options a shot? Drugs? I really do not want to go on a drug regimen. Please give any suggestions as to what I should ask.

Thanks!

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@birdman518

I am going back for my first "real" consultation with my neurologist soon. My first visit didn't really count because we agreed to wait until my Medicare coverage started May 1. He did recommend some stretching which I performed reliably for at least 6 weeks, but I could not see any help at all… sometimes I felt worse.

My symptoms are daily pain and numbness from my neck down to my right thumb and index finger… BUT many days it involves my whole arm. I have pretty bad right shoulder pain. I have also developed left shoulder pain. Less commonly, I feel tingling in my left big toe… sometimes in the right as well.

Finally, I have stability issues. I have fallen a few times, and am often unsteady. I am certain this is not heart related… there has been no dizziness. It always feels muscular.

I guess it is almost certain I have a C6-C7 type of PN.. but there could be more going on given my other symptoms.

So I am looking for what to expect now. I expected he would want to order an MRI but his nurse told me he would not (I have a pacemaker so I inquired about getting info from my cardiologist).

Are my options a shot? Drugs? I really do not want to go on a drug regimen. Please give any suggestions as to what I should ask.

Thanks!

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Hello, I put a similar question out to the group prior to my first neurologist appointment, I also did a lot of research, and follow the discussions on the group about what people have found helpful. I’ve attached a list I put together for my visit. I’d like to suggest you do research on what you already know about your condition and review the discussions this group has had. There is a wealth of knowledge that you can take with you which can help inform your visit with the neurologist. We’re all different with our symptoms and causes, but I feel, for me anyway, that I want to know all the available treatments, side effects, tests, etc. And, don’t be afraid to ask questions!

Shared files

Neurologist Appointment Prep (Neurologist-Appointment-Prep.pdf)

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@birdman518

I am going back for my first "real" consultation with my neurologist soon. My first visit didn't really count because we agreed to wait until my Medicare coverage started May 1. He did recommend some stretching which I performed reliably for at least 6 weeks, but I could not see any help at all… sometimes I felt worse.

My symptoms are daily pain and numbness from my neck down to my right thumb and index finger… BUT many days it involves my whole arm. I have pretty bad right shoulder pain. I have also developed left shoulder pain. Less commonly, I feel tingling in my left big toe… sometimes in the right as well.

Finally, I have stability issues. I have fallen a few times, and am often unsteady. I am certain this is not heart related… there has been no dizziness. It always feels muscular.

I guess it is almost certain I have a C6-C7 type of PN.. but there could be more going on given my other symptoms.

So I am looking for what to expect now. I expected he would want to order an MRI but his nurse told me he would not (I have a pacemaker so I inquired about getting info from my cardiologist).

Are my options a shot? Drugs? I really do not want to go on a drug regimen. Please give any suggestions as to what I should ask.

Thanks!

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@birdman518 you will notice that I have moved your post into your original post/discussion on a first consultation with a neurologist. @athenalee has already responded and other members like @johnbishop @terrydclaar @artscaping and @rwinney may be able to share more based on their experiences.

This post by @johnbishop may also provide some helpful information:
https://connect.mayoclinic.org/comment/290563/
Also, here is another discussion that you might find helpful as well.
Testing for Neuropathy:
https://connect.mayoclinic.org/discussion/testing-for-neuropathy/
I know you are concerned about what drug therapy options might be recommended. Can you share a little more about your hesitancies for a drug regimen?

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Thanks, Amanda. I have a general distrust of "big pharma", especially when it is a "drug for life". Obviously there are many cases where drugs are the appropriate and perhaps only option. Cost is always an issue. As I am. just starting with Medicare, and I am only taking Losartan, I got the cheapest Part D plan. I will be committed to it for a year, so I would prefer not to take on an expensive monthly drug.
I will try to remain open, but part of the impetus for my post is the overall sense that there is basically nothing that can be done for PN,barring very specific things like ruptured discs that can be surgically repaired.

I will review the posts you linked to, and thanks again to all forum members!

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@athenalee

Hello, I put a similar question out to the group prior to my first neurologist appointment, I also did a lot of research, and follow the discussions on the group about what people have found helpful. I’ve attached a list I put together for my visit. I’d like to suggest you do research on what you already know about your condition and review the discussions this group has had. There is a wealth of knowledge that you can take with you which can help inform your visit with the neurologist. We’re all different with our symptoms and causes, but I feel, for me anyway, that I want to know all the available treatments, side effects, tests, etc. And, don’t be afraid to ask questions!

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@athenalee I just read your pdf on neurologist appointment prep. It’s very good. It sure makes a difference when you go to appointments prepared! Did you use the list on your most recent doctor visit?

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@becsbuddy

@athenalee I just read your pdf on neurologist appointment prep. It’s very good. It sure makes a difference when you go to appointments prepared! Did you use the list on your most recent doctor visit?

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Thank you. Yes. It was helpful for me to write it all down, that way I’d have in my mind. I brought a hard copy with me to take notes on. I have had so many doctors visits over the past two years, I also type up my symptoms, severity, etc. and questions. I typically send it along to my doctor and bring a copy with me so I don’t forget anything.

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@athenalee

Hello, I put a similar question out to the group prior to my first neurologist appointment, I also did a lot of research, and follow the discussions on the group about what people have found helpful. I’ve attached a list I put together for my visit. I’d like to suggest you do research on what you already know about your condition and review the discussions this group has had. There is a wealth of knowledge that you can take with you which can help inform your visit with the neurologist. We’re all different with our symptoms and causes, but I feel, for me anyway, that I want to know all the available treatments, side effects, tests, etc. And, don’t be afraid to ask questions!

Jump to this post

Thank you!

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