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What to expect...
during your first neurologist appointment? I would post this in the neurology section but it seems that this board gets more traffic.
My GP did not give me a neurological exam other than checking my reflexes in my knees and running their fingers along the back of my hands. Should I expect the neurologist to do a detailed neurological exam? If they don't, should I ask for one?
What should I ask of the doctor? Anything I should bring with me?
I want to make sure to make the best of my appointment and get to the bottom of what is causing my symptoms.
Here is my background:
About a year ago I had tingling in my hands, more so in my right hand. I also had double vision that would come and go. I went to the doctor for both and was basically dismissed. The symptoms got better and eventually went away. So I forgot about them as well.
Starting in April this year, the tingling came back and was worse this time. My left arm was tingly from the forearm to my hand. I also get lightheaded when I stand up and almost pass out. This still happens but the tingling has slowly gotten better. I also had numbness in my left foot for a while that has also gotten better and now has disappeared. The double vision is also present and followed the same pattern of gradually getting worse and then getting better but I still have the double vision daily just not as frequent as when things were at their worst.
Over the past few days though I have started to lose my balance when I get overheated from working out. I am a very active runner and the days have been very hot here. I try to run during the coolest part of the day but I still seem to get overheated very easily and get dizzy and off balance. And, no I am not dehydrated!
I have also been extremely tired to the point where I have to have an afternoon nap even if I have had a good night's sleep. It's like someone ***** the energy right out of me.
Any thoughts and/or advice is much appreciated.
My GP did not give me a neurological exam other than checking my reflexes in my knees and running their fingers along the back of my hands. Should I expect the neurologist to do a detailed neurological exam? If they don't, should I ask for one?
What should I ask of the doctor? Anything I should bring with me?
I want to make sure to make the best of my appointment and get to the bottom of what is causing my symptoms.
Here is my background:
About a year ago I had tingling in my hands, more so in my right hand. I also had double vision that would come and go. I went to the doctor for both and was basically dismissed. The symptoms got better and eventually went away. So I forgot about them as well.
Starting in April this year, the tingling came back and was worse this time. My left arm was tingly from the forearm to my hand. I also get lightheaded when I stand up and almost pass out. This still happens but the tingling has slowly gotten better. I also had numbness in my left foot for a while that has also gotten better and now has disappeared. The double vision is also present and followed the same pattern of gradually getting worse and then getting better but I still have the double vision daily just not as frequent as when things were at their worst.
Over the past few days though I have started to lose my balance when I get overheated from working out. I am a very active runner and the days have been very hot here. I try to run during the coolest part of the day but I still seem to get overheated very easily and get dizzy and off balance. And, no I am not dehydrated!
I have also been extremely tired to the point where I have to have an afternoon nap even if I have had a good night's sleep. It's like someone ***** the energy right out of me.
Any thoughts and/or advice is much appreciated.
Or at the end, you might ask casually, 'Did all that check out as normal?' I don't know why doctors, neuros especially, so often fail to realize that this is not simply a medical exercise, but is important for the patient to understand.
When I finally got to a neuro who knew what he was doing MS-wise, I could tell at least one thing was wrong because I had to repeat one of the strength tests several times. So I asked why, and was told there was something wrong with my hip flexors. (And there is.)
If symptoms consist of dizziness, numbness or other abnormal sensations, cognitive problems, etc., getting some sort of diagnosis is very hard.. This is because they are all symptoms you report, and can't be seen or measured by the doctor (signs). This is one reason so many people hang out in limbo for years.. For a doctor to diagnose MS, he or she wants to see abnormalities in the office exam and more abnormalities in testing, above all the MRI.
However, you may well not have MS at all. A great many people who visit here don't, and I hope you're one of them.
ess
When I finally got to a neuro who knew what he was doing MS-wise, I could tell at least one thing was wrong because I had to repeat one of the strength tests several times. So I asked why, and was told there was something wrong with my hip flexors. (And there is.)
If symptoms consist of dizziness, numbness or other abnormal sensations, cognitive problems, etc., getting some sort of diagnosis is very hard.. This is because they are all symptoms you report, and can't be seen or measured by the doctor (signs). This is one reason so many people hang out in limbo for years.. For a doctor to diagnose MS, he or she wants to see abnormalities in the office exam and more abnormalities in testing, above all the MRI.
However, you may well not have MS at all. A great many people who visit here don't, and I hope you're one of them.
ess
You can politely ask to have the neurological exam explained to you. That is what I do.
Alex
Alex
Thanks for all the helpful advice and information. I'm so glad you all have taken the time to reply. I would not have known to expect those things.
If it happens to be MS, we have an MS specialist at the hospital where I am going and it's only about 10mins from where I live.
Honestly, I have no idea what is wrong with me. I just know that there is something going on and even if there isn't much treatment just knowing what it is will give me some kind of peace of mind. I have trouble dealing with the just not knowing part. It's frustrating.
Do you think the doctor will tell me if they find anything abnormal during the neurological exam? I'm picturing doing all these things and the doctor just not saying anything and then either saying I'm fine or get an MRI, ect.
If it happens to be MS, we have an MS specialist at the hospital where I am going and it's only about 10mins from where I live.
Honestly, I have no idea what is wrong with me. I just know that there is something going on and even if there isn't much treatment just knowing what it is will give me some kind of peace of mind. I have trouble dealing with the just not knowing part. It's frustrating.
Do you think the doctor will tell me if they find anything abnormal during the neurological exam? I'm picturing doing all these things and the doctor just not saying anything and then either saying I'm fine or get an MRI, ect.
If you watch Big Bang neurologists are the Sheldone Cooper's of the doctor world. They are brainy and look at every patient as a puzzle. They are also "the nothing but the facts types". They do not want extra info they look at it like heresay in court. They look for evidence themselves not from patients or other doctors.
Many of us have had a lot of experience with neurologists and we speak from experience.
There is a shortage of MS Specialists in the country all neurologists are not MS Specialists. They can have thousands of patients. They just do not have the time to spend with patients. Some make the time.Others just can't. Now that I am diagnosed I do not see my MS Specialist. I have seen him 3 times since 2010. I see his PA who spends an hour with me.
The way they think is it is not MS until they have ruled everything else out and it is or is not MS. This can take time.
If a person goes in and says I have MS and has pages of symptoms it muddies the waters so to speak. I had one neurologist throw me out of her office when I simply asked "What about MS'. She sent my GP a letter saying I did not have MS. I had to start all over with the MS Specialist. I did not say a word about my other neurologists to him. He looked at their notes and decided they were idiots. He watched me for a year and a half even all my MRIs had classic MS. My lumbar puncture over whelmingly showed MS and I was diagnosed.
I probably have the longest diagnosis. I was sent to the Mayo clinic in 1965 for a mysterious neurological illness. I was sent to Duke in 1970. I saw neurologists my whole growing up. I forgot about it since my MS damage has been there since 1965. I thought I was normal. My parents never explained it to me. In 2007 my GP did a neurological exam and found the MS.
I have the classic MS eyes. They point in different directions. I have lots of friends with MS with the same looking eyes. Most had optic neuritis which is the most common start to MS.
Most neurologist will see you every three to six months to see changes this is not them dissing you this means they see something. If they make no further appointments that is a dismissal.
Getting diagnosed with MS is not a magic bullet. I thought I would be diagnosed and they will fix things. With me there was nothing to be fixed. They can slow progression or help symptoms but mostly a person has to adjust to MS. MS specialist end up sending you to other professionals. I go to a pt and a pain clinic. I only see the neurologist every few years and his PA once a year.
My visits with the neurologists were 20 minutes. He looked at my history and symptoms. He did a neurological exam. If he had test results he looked at those. My GP told me to not say much. That served me well.
Being a MS Specialist is not easy. Few doctors want to be MS Specialists. At a local University the MS Society will pay for a doctor in medical school to go into MS and they have had no takers in years. It is hard to diagnose and hard to treat. You have a lot of patients with a lot of problems you can't solve. They are dedicated men and women.
I felt dismissed but they were just doing what neurologists do. It made me feel better.
Alex
Many of us have had a lot of experience with neurologists and we speak from experience.
There is a shortage of MS Specialists in the country all neurologists are not MS Specialists. They can have thousands of patients. They just do not have the time to spend with patients. Some make the time.Others just can't. Now that I am diagnosed I do not see my MS Specialist. I have seen him 3 times since 2010. I see his PA who spends an hour with me.
The way they think is it is not MS until they have ruled everything else out and it is or is not MS. This can take time.
If a person goes in and says I have MS and has pages of symptoms it muddies the waters so to speak. I had one neurologist throw me out of her office when I simply asked "What about MS'. She sent my GP a letter saying I did not have MS. I had to start all over with the MS Specialist. I did not say a word about my other neurologists to him. He looked at their notes and decided they were idiots. He watched me for a year and a half even all my MRIs had classic MS. My lumbar puncture over whelmingly showed MS and I was diagnosed.
I probably have the longest diagnosis. I was sent to the Mayo clinic in 1965 for a mysterious neurological illness. I was sent to Duke in 1970. I saw neurologists my whole growing up. I forgot about it since my MS damage has been there since 1965. I thought I was normal. My parents never explained it to me. In 2007 my GP did a neurological exam and found the MS.
I have the classic MS eyes. They point in different directions. I have lots of friends with MS with the same looking eyes. Most had optic neuritis which is the most common start to MS.
Most neurologist will see you every three to six months to see changes this is not them dissing you this means they see something. If they make no further appointments that is a dismissal.
Getting diagnosed with MS is not a magic bullet. I thought I would be diagnosed and they will fix things. With me there was nothing to be fixed. They can slow progression or help symptoms but mostly a person has to adjust to MS. MS specialist end up sending you to other professionals. I go to a pt and a pain clinic. I only see the neurologist every few years and his PA once a year.
My visits with the neurologists were 20 minutes. He looked at my history and symptoms. He did a neurological exam. If he had test results he looked at those. My GP told me to not say much. That served me well.
Being a MS Specialist is not easy. Few doctors want to be MS Specialists. At a local University the MS Society will pay for a doctor in medical school to go into MS and they have had no takers in years. It is hard to diagnose and hard to treat. You have a lot of patients with a lot of problems you can't solve. They are dedicated men and women.
I felt dismissed but they were just doing what neurologists do. It made me feel better.
Alex
I'll make it short and precise. I think that will help because I always feel like I don't tell the doctor very well what is going on with me when they ask me.
It sounds like neurologists are a special sort. Do you think it makes them mad because they feel like their expertise are being insulted? I totally get that! In a different way though.
Of course I have googled my symptoms and that's obviously how I wound up here. But I know I am not qualified to self-diagnose. Yet I still want to be informed about the possibilities.
It sounds like neurologists are a special sort. Do you think it makes them mad because they feel like their expertise are being insulted? I totally get that! In a different way though.
Of course I have googled my symptoms and that's obviously how I wound up here. But I know I am not qualified to self-diagnose. Yet I still want to be informed about the possibilities.
Hi MG -
I agree that less is more. If you walk in with a really long list and start using medicsal terminology, you will likely to be put on th "Oh no, not another one!" list.
I would have my top 2-4 symptoms interms of quility of life imact. Let him/her do most of the talking, hopefully in the form of asking questions. Do Not mention time spoent with Dr. Google and do not suggest a possible diagnosis (even if you're right you'll just p*ss them off :-))
Kyle
I agree that less is more. If you walk in with a really long list and start using medicsal terminology, you will likely to be put on th "Oh no, not another one!" list.
I would have my top 2-4 symptoms interms of quility of life imact. Let him/her do most of the talking, hopefully in the form of asking questions. Do Not mention time spoent with Dr. Google and do not suggest a possible diagnosis (even if you're right you'll just p*ss them off :-))
Kyle
Again, thank you for the helpful replies. My "journal" is more of a list with dates. But I will definite make up a bulleted list and clean it up. I've read very good reviews about the neuro I'm going to.
I'm definitely keeping an open mind about what it could be. But I definitely think that there is something going on whether neurological or something else. I just don't feel right and I don't think I should feel this way at 28 years old.
I'm definitely keeping an open mind about what it could be. But I definitely think that there is something going on whether neurological or something else. I just don't feel right and I don't think I should feel this way at 28 years old.
Sorry------
What you can and can't do now. Don't bring up any diseases, and don't make it obvious you have searched the web. That's a big negative for neuros.
Good luck.
ess
What you can and can't do now. Don't bring up any diseases, and don't make it obvious you have searched the web. That's a big negative for neuros.
Good luck.
ess
I don't recommend bringing your journal. Even if you just use it for your own reference, that could take time, and neuros are not a patient lot.
I strongly suggest a one-page, bullleted list, very short phrases, leaving some white space to make it readable. Don't speculate about causes, etc., just list what happened when. This will greatly increase your chances of its being read, or at least having it put in your file. Take your own copy for reference.
I hope you'll be given the opportunity to say a little about yourself. If so, mention your age, your previous activity level, and what
I strongly suggest a one-page, bullleted list, very short phrases, leaving some white space to make it readable. Don't speculate about causes, etc., just list what happened when. This will greatly increase your chances of its being read, or at least having it put in your file. Take your own copy for reference.
I hope you'll be given the opportunity to say a little about yourself. If so, mention your age, your previous activity level, and what
It would be better if you summarize your journal to one page if you can. Few doctors are going to read pages and pages. Waiting is hard. It is the hardest part of illness not knowing.
Alex
Alex
Thank you both for the replies!
I really just want to find out what is wrong with me. I know it may take some time. I'm also nervous about the doctor not taking me serious as I've had that happen before. I know something is not right with me. These symptoms are not something I feel like can be explained by something simple like the GPs I have been seeing are trying to do.
The whole lightheadedness thing may or may not be related to what is going on with me. That could totally be from having low blood pressure already and it going even lower when I go from sitting to standing. But I am going to tell the doctor about it anyway because it could end up being important to my diagnosis.
I'm not saying that I think I have MS but I know with the symptoms I'm having it is a possibility. Another possibility that I might have to push for testing is Lyme disease. I posted in that community and got some great replies. There is a reason I suspect Lyme. If you want you can read my post over there.
I have been keeping a journal of symptoms and how I feel. Should I bring that with me?
So far this morning hasn't been too bad. I went for a run and was a little off balance after but now I am having tingles again :( in my feet and some in my hands. It seems my left side always tingles more though.
One thing I forgot to mention is that I have had these "attacks" almost every summer. Around the same time each year. But each time the symptoms have gotten worse and I have developed a new symptom each time. Like last time it was the double vision. This time it is the balance issues. Is it weird that the symptoms come and go like this and intensify each time?
How do you all deal with the waiting game? Things are really starting to interfere with my daily life and the things I like to do. Before, the symptoms were more an annoyance. But now it is hindering me like the balance issues and the tiredness. I would like to be able to know what is causing this to happen to me so I could at least try to do something to make things better.
I really just want to find out what is wrong with me. I know it may take some time. I'm also nervous about the doctor not taking me serious as I've had that happen before. I know something is not right with me. These symptoms are not something I feel like can be explained by something simple like the GPs I have been seeing are trying to do.
The whole lightheadedness thing may or may not be related to what is going on with me. That could totally be from having low blood pressure already and it going even lower when I go from sitting to standing. But I am going to tell the doctor about it anyway because it could end up being important to my diagnosis.
I'm not saying that I think I have MS but I know with the symptoms I'm having it is a possibility. Another possibility that I might have to push for testing is Lyme disease. I posted in that community and got some great replies. There is a reason I suspect Lyme. If you want you can read my post over there.
I have been keeping a journal of symptoms and how I feel. Should I bring that with me?
So far this morning hasn't been too bad. I went for a run and was a little off balance after but now I am having tingles again :( in my feet and some in my hands. It seems my left side always tingles more though.
One thing I forgot to mention is that I have had these "attacks" almost every summer. Around the same time each year. But each time the symptoms have gotten worse and I have developed a new symptom each time. Like last time it was the double vision. This time it is the balance issues. Is it weird that the symptoms come and go like this and intensify each time?
How do you all deal with the waiting game? Things are really starting to interfere with my daily life and the things I like to do. Before, the symptoms were more an annoyance. But now it is hindering me like the balance issues and the tiredness. I would like to be able to know what is causing this to happen to me so I could at least try to do something to make things better.
The software they use to filter language on this site is an hysterically blunt instrument. All you typed was s u c k s, but it deems this a saucy version of "stinks" rather than a form of the lily-white verb "to s u c k".
Anyway, back to your question. You'll likely be given tests that seem like field sobriety tests (stand on one leg, walk heel-to-toe, close your eyes and touch your nose) as well as some others meant to determine if both sides are equal in terms of strength and coordination. Field of vision tests are also conducted (look straight ahead, how many fingers am I holding up in your peripheral vision). You may have a tuning fork used (again, to determine sensory differences on both sides), and be asked to push against and pull towards any number of things. You'll likely have something a bit sharp (toothpick, housekey) rubbed along the bottom of your feet.
You'll be asked a brief history, what you're there for, rough dates, any recent diseases or trauma (car accident, broken bones, etc).
Depending on the neurologist's experience and the immediate feedback from your exam, you may be referred for an MRI or other tests with alphabet soup names like VEP, EMG and likely have blood drawn to rule out the usual suspects such as vitamin deficiency.
If you have any questions you're thinking of now, write them down. It's very easy to forget them when you're in the office!
Anyway, back to your question. You'll likely be given tests that seem like field sobriety tests (stand on one leg, walk heel-to-toe, close your eyes and touch your nose) as well as some others meant to determine if both sides are equal in terms of strength and coordination. Field of vision tests are also conducted (look straight ahead, how many fingers am I holding up in your peripheral vision). You may have a tuning fork used (again, to determine sensory differences on both sides), and be asked to push against and pull towards any number of things. You'll likely have something a bit sharp (toothpick, housekey) rubbed along the bottom of your feet.
You'll be asked a brief history, what you're there for, rough dates, any recent diseases or trauma (car accident, broken bones, etc).
Depending on the neurologist's experience and the immediate feedback from your exam, you may be referred for an MRI or other tests with alphabet soup names like VEP, EMG and likely have blood drawn to rule out the usual suspects such as vitamin deficiency.
If you have any questions you're thinking of now, write them down. It's very easy to forget them when you're in the office!
A neurologist will do a detailed exam. The reflexes and such show more than a MRI. Neurologists can tell a lot from what we see as a simple test, may be he felt he did not need to go further. Lightheaded to passing out is not MS. Bring a list of your top 5 symptoms. A timeline can help. Nothing more than a page. It may take more than an appointment. After they first suspected MS it took me two years of tests. Neurologists like to see changes over time for themselves.
Alex
Alex
Also, I've had all my vitamins and other labs check all with normal results.
And I'm not sure why there are ***** in my post because I didn't post a bad word. At least I don't think I did but I can't half type or see sometimes.
And I'm not sure why there are ***** in my post because I didn't post a bad word. At least I don't think I did but I can't half type or see sometimes.
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