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Should I seek second opinion
In Sept. I went to my eye doctor for a routine appointment where he discovered bilateral papilloedema, at his referral I was seen by a local Neuro. The Neuro ordered several tests based on the swelling and my previous symptoms. I loss the use of my legs for about a week in 1998, and had a full round of thyroid testing in 2007 due to a swallowing issue and since the birth of my daughter I have been experiencing head pain.
Bloodwork came back negative for Lyme, Lupus, and everything else looked alright but there was a slightly elevated sed rate.
The VEP impression states: The PRVER is abnormal bilaterally. The comments from the test states: The PRever resulting from full field stimulation of both eyes shows delay of the absolute peak wave latency of P100. The upper limit of normal is 110msec. This delay could be indicative of a lesion involving the optic visual pathway anterior to the optic chiasm bilaterally.
The MRI findings are as follows: There is a 9mm focal area of hyperintensity in the right parietal white matter which extends toward the atrium right lateral ventricle. There are small punctate areas of abnormal signal intensity in the white matter of the left parietal lobe and each frontal lobe. There are two areas of signal abnormality in the right external capsule. No cortical infarct, mass, hemorrhage, midline shift or hydrocephalus is apparent. Flow void does appear to be present in the major vascular structures.
Impressions: 1. There are multiple white matter lesions in the supratentorial white matter concerning for the possibility of demyelinating disease. Follow up with post contrast T1 imaging and sagittal FLAIR images may be helpful for further evaluation.
My Neuro's report on the MRI findings reads that there is only one small rounded hyperintensity seen in the right subcortical white matter it is nonspecific. No evidence of demyelination or small vessel arteriosclerotic disease.
My hope is that you can explain to me why the Neuro is dismissive to me. At the appointment after all the testing he read everything to me and said that I could call him if my eye doctor doesn't see an improvement in the swelling.
My eye doctor did confirm in early November that the swelling has gone down, the head pain has not improved, I am having other small symptoms that could just be stress related.
Our medical insurance has changed so seeking a second opinion will be very expensive, so if my Neuro is right and there are no red flags here please let me know
Bloodwork came back negative for Lyme, Lupus, and everything else looked alright but there was a slightly elevated sed rate.
The VEP impression states: The PRVER is abnormal bilaterally. The comments from the test states: The PRever resulting from full field stimulation of both eyes shows delay of the absolute peak wave latency of P100. The upper limit of normal is 110msec. This delay could be indicative of a lesion involving the optic visual pathway anterior to the optic chiasm bilaterally.
The MRI findings are as follows: There is a 9mm focal area of hyperintensity in the right parietal white matter which extends toward the atrium right lateral ventricle. There are small punctate areas of abnormal signal intensity in the white matter of the left parietal lobe and each frontal lobe. There are two areas of signal abnormality in the right external capsule. No cortical infarct, mass, hemorrhage, midline shift or hydrocephalus is apparent. Flow void does appear to be present in the major vascular structures.
Impressions: 1. There are multiple white matter lesions in the supratentorial white matter concerning for the possibility of demyelinating disease. Follow up with post contrast T1 imaging and sagittal FLAIR images may be helpful for further evaluation.
My Neuro's report on the MRI findings reads that there is only one small rounded hyperintensity seen in the right subcortical white matter it is nonspecific. No evidence of demyelination or small vessel arteriosclerotic disease.
My hope is that you can explain to me why the Neuro is dismissive to me. At the appointment after all the testing he read everything to me and said that I could call him if my eye doctor doesn't see an improvement in the swelling.
My eye doctor did confirm in early November that the swelling has gone down, the head pain has not improved, I am having other small symptoms that could just be stress related.
Our medical insurance has changed so seeking a second opinion will be very expensive, so if my Neuro is right and there are no red flags here please let me know
gonzo: To answer your question, "can the symptoms really swing that far from each other...?" In MS, yes. While I'm not suggesting you have MS or anything else in particular, I feel strongly that you have not been properly evaluated. Given the fact that there are lesions on your MRI and symptoms that suggest MS, it is standard practice of medicine to use contrast under those circumstances. Frankly, I think your neurologist is a nincompoop because he did not order contrast based on your symptoms alone.
I am assuming that you have googled "MS Symptoms" and that is why you have come to an MS site. So you already know that your symptoms are suggestive of MS. Yes, they can be from other causes. Please be sure to get a thorough check up if your haven't, okay?
I can only speak from my heart to you and say that if it were me, I would get another neurologist. Fatigue, urinary retention, leakage, numbness, difficult sleeping, lesions, optic neuritis, etc. are text-book symptoms of MS. You wrote "I would think that some of these things would be more severe if this was MS." That is not correct. I've had MS for 8 years now and have fewer on-going symptoms than you. I had more numbness than you when I was diagnosed. (I have none now) That is the tricky thing about MS and other neurological problems. They can be bizarre and baffling. Your neurologist is right that the MRI is nonspecific, mine was too at diagnosis, but my HISTORY gave me a definitive diagnosis. Over the years, a few new lesions can be seen and "light up" with contrast.
If I were you I would call, then FOLLOW UP WITH A NICE LETTER to your neurologist and ask him to explain to you why he is not ordering another MRI with contrast. Ask him if urinary retention, leakage, overwhelming fatigue, visual disturbances, transient numbness, headache, lesion on optic nerve, multiple brain lesions, swallowing issues, headaches, and history of "loss of legs" does not warrant further investigation.
Geez, now I'm getting frustrated (and angry) as I write this and scratching my head in disbelief that you were dismissed. You are going to have to work with your new insurance. Find out what they will do for you at this stage of the game. If your state had a medicaid program, maybe you can use that temporarily until your new insurance kicks in.
If you are having repeated UTI's, it could be because you are not emptying your bladder completely. In MS, any infection can cause an exacerbation so any infection needs to be treated promptly.
Okay, now I've written a book of the subject. Sorry..I tend to do that. Let us know how you are doing, okay?
I am assuming that you have googled "MS Symptoms" and that is why you have come to an MS site. So you already know that your symptoms are suggestive of MS. Yes, they can be from other causes. Please be sure to get a thorough check up if your haven't, okay?
I can only speak from my heart to you and say that if it were me, I would get another neurologist. Fatigue, urinary retention, leakage, numbness, difficult sleeping, lesions, optic neuritis, etc. are text-book symptoms of MS. You wrote "I would think that some of these things would be more severe if this was MS." That is not correct. I've had MS for 8 years now and have fewer on-going symptoms than you. I had more numbness than you when I was diagnosed. (I have none now) That is the tricky thing about MS and other neurological problems. They can be bizarre and baffling. Your neurologist is right that the MRI is nonspecific, mine was too at diagnosis, but my HISTORY gave me a definitive diagnosis. Over the years, a few new lesions can be seen and "light up" with contrast.
If I were you I would call, then FOLLOW UP WITH A NICE LETTER to your neurologist and ask him to explain to you why he is not ordering another MRI with contrast. Ask him if urinary retention, leakage, overwhelming fatigue, visual disturbances, transient numbness, headache, lesion on optic nerve, multiple brain lesions, swallowing issues, headaches, and history of "loss of legs" does not warrant further investigation.
Geez, now I'm getting frustrated (and angry) as I write this and scratching my head in disbelief that you were dismissed. You are going to have to work with your new insurance. Find out what they will do for you at this stage of the game. If your state had a medicaid program, maybe you can use that temporarily until your new insurance kicks in.
If you are having repeated UTI's, it could be because you are not emptying your bladder completely. In MS, any infection can cause an exacerbation so any infection needs to be treated promptly.
Okay, now I've written a book of the subject. Sorry..I tend to do that. Let us know how you are doing, okay?
I would definitely seek a second opinion, gonzo. While I'm not a neurologist, your symptoms sound neurological to me.
You need to start treatment as soon as possible - but with no insurance, it's going to be difficult to afford the treatments! Right now there's not much available to you. With a diagnosis of MS, you can start looking at clinical trials, which will make treatment available to you - albeit experimental treatment.
You need to start treatment as soon as possible - but with no insurance, it's going to be difficult to afford the treatments! Right now there's not much available to you. With a diagnosis of MS, you can start looking at clinical trials, which will make treatment available to you - albeit experimental treatment.
The other symptoms are hard for me to talk about because it makes me feel like I am searching for something that might not be there. First off they do seem to come and go with no real regularity.
I have begun leaking urine with no sensation of needing to go or stopping myself- (I have had bladder infections and kidney stones in the past, so again could be completely unrelated) To go along with that there are times I can't seem to go more than a drip when I have a "full" sensation which causes discomfort, but I have always gone later in the day. And then there is sometimes just a sharp stabbing pain in that area (not while going) and doesn't really seem to go with anything except making me jump and look crazy to people.
Tired- I'm so tired but with three little ones that makes sense. There are times that I can't wake up enough to take care of the kids and husband has taken time off work to be there with them. But on the flip there are times I can't sleep well at all.
Head pain the pain in my head is still there and has not resolved itself with the swelling going down in the eyes.
Leg pain the muscles in my legs feel so sore and fatigued and it does not match my activity level. With that there are times that my hands up into my arms feel numb and swell.
As I have said I do realize that these symptoms could have many causes and I would think that some of these things would be more severe if this was MS but I am at a loss because the Neuro dismissed my case saying the MRI was nonspecific, he wouldn't call it MS or make any dx, come see him if there was more swelling in the eyes.
I don't know if seeking the second opinion is the right thing to do at this point or if I should wait until something else happens (If it even does). I feel so out of it trying to explain to the doctors, " sometimes I pee without meaning to and sometimes I can't pee when I need to." Can the symptoms really swing that far from each other or would a Flare of MS cause my arms to be numb for a certain length of time- like a week or more and under a week is just a fluke thing?
Thanks for the info! You are surely helping my fustration level!
I have begun leaking urine with no sensation of needing to go or stopping myself- (I have had bladder infections and kidney stones in the past, so again could be completely unrelated) To go along with that there are times I can't seem to go more than a drip when I have a "full" sensation which causes discomfort, but I have always gone later in the day. And then there is sometimes just a sharp stabbing pain in that area (not while going) and doesn't really seem to go with anything except making me jump and look crazy to people.
Tired- I'm so tired but with three little ones that makes sense. There are times that I can't wake up enough to take care of the kids and husband has taken time off work to be there with them. But on the flip there are times I can't sleep well at all.
Head pain the pain in my head is still there and has not resolved itself with the swelling going down in the eyes.
Leg pain the muscles in my legs feel so sore and fatigued and it does not match my activity level. With that there are times that my hands up into my arms feel numb and swell.
As I have said I do realize that these symptoms could have many causes and I would think that some of these things would be more severe if this was MS but I am at a loss because the Neuro dismissed my case saying the MRI was nonspecific, he wouldn't call it MS or make any dx, come see him if there was more swelling in the eyes.
I don't know if seeking the second opinion is the right thing to do at this point or if I should wait until something else happens (If it even does). I feel so out of it trying to explain to the doctors, " sometimes I pee without meaning to and sometimes I can't pee when I need to." Can the symptoms really swing that far from each other or would a Flare of MS cause my arms to be numb for a certain length of time- like a week or more and under a week is just a fluke thing?
Thanks for the info! You are surely helping my fustration level!
I have a follow up with my eye doctor again on the 6th of March. He was certain of his dx and very concerned at the original appt in sept. and performed extra tests that concluded there were enlarged blindspots in my vision field. At my follow up appt in Nov he did see an improvement but it had not completely resolved itself but the blindspots in my vision were slightly smaller. Like I said in my original post I'm just trying to figure out if this situation seems like I should have someone else take a look. BTW I also had a LP that showed an opening pressure of 25, again the current Neuro wasn't concerned saying that a "25" wouldn't cause symptoms. I will ask my eye doctor about a referral to retinal MD, anything else you would ask at the upcoming appt? Thank you
Have you followed up with the eye MD?
Papilledema is ON swelling usually caused by increased intracranial pressure. There is a pseudopapilledema (can be a benign finding) that looks like the other that you need to make sure you see a proper MD (retinal MD) to make sure you are getting a proper Dx
When are you to follow up with the neuro?
Papilledema is ON swelling usually caused by increased intracranial pressure. There is a pseudopapilledema (can be a benign finding) that looks like the other that you need to make sure you see a proper MD (retinal MD) to make sure you are getting a proper Dx
When are you to follow up with the neuro?
Hello. Sorry you are having so many questions after visiting your neurologist. What is the difference between "my neuro's report" and the actual "MRI findings?" Is your neurologist writing his conclusions based on the actual MRI report? There is a discrepancy between the two and would be a red flag. Also, with your symptoms and history the MRI should have included a contrast dye, WITHOUT QUESTION! That was a mistake.
My suggestion to you is to become well versed in MRI and their use in diagnosing neurological problems. Use the "Health Pages" section located at the right upper corner on this page. Then make your case to your health insurance provider to PAY for another neurologist and another MRI. My family members have found themselves in similar situations where medical care was inadequate and we didn't know what to do. After much turmoil, I placed the responsibility of the situation on the health insurance company. Try this. Point out to them that the MRI should have been done with contrast. You are having symptoms POSSIBLY suggestive of MS, white matter lesions is the area of your brain, swelling of the optic nerve, abnormal vision tests, worsening of condition after the birth of your baby. Demyelination was named as a possible culprit. Whatever the cause, it is good medical practice to RULE OUT other causes.
In my opinion, with your history alone, most neurologist would suspect MS. That is why it was a HUGE mistake not to have the contrast dye which could offer more information.
I would say there are red flags..............the size of the flag that flies over the White House.
You might call this neurologist and have him explain to you why he concludes there is no demyelination when the MRI report states otherwise and ask him why he does not think another MRI with contrast in in order, especially given your symptoms. You take the chance of making him/her mad, but oh well!
I am curious to know if this neuro gave you a complete neurological examination each time you saw him? These tests are simple and done by the neurologist. Walk a straight line, touch your nose while following and touching his finger, testing all your reflexes, close your eyes and put your arms out, sensation tests (done a couple of ways), simple memory tests, strength & resistance tests, AND probably most importantly, spend a fair amount of time talking and listening to you about what you are experiencing now and what you have in the past. One more thing, did he look at the MRI films or CD himself? Or did he only look at the written report?
What symptoms do you have now that you contribute to stress?
My suggestion to you is to become well versed in MRI and their use in diagnosing neurological problems. Use the "Health Pages" section located at the right upper corner on this page. Then make your case to your health insurance provider to PAY for another neurologist and another MRI. My family members have found themselves in similar situations where medical care was inadequate and we didn't know what to do. After much turmoil, I placed the responsibility of the situation on the health insurance company. Try this. Point out to them that the MRI should have been done with contrast. You are having symptoms POSSIBLY suggestive of MS, white matter lesions is the area of your brain, swelling of the optic nerve, abnormal vision tests, worsening of condition after the birth of your baby. Demyelination was named as a possible culprit. Whatever the cause, it is good medical practice to RULE OUT other causes.
In my opinion, with your history alone, most neurologist would suspect MS. That is why it was a HUGE mistake not to have the contrast dye which could offer more information.
I would say there are red flags..............the size of the flag that flies over the White House.
You might call this neurologist and have him explain to you why he concludes there is no demyelination when the MRI report states otherwise and ask him why he does not think another MRI with contrast in in order, especially given your symptoms. You take the chance of making him/her mad, but oh well!
I am curious to know if this neuro gave you a complete neurological examination each time you saw him? These tests are simple and done by the neurologist. Walk a straight line, touch your nose while following and touching his finger, testing all your reflexes, close your eyes and put your arms out, sensation tests (done a couple of ways), simple memory tests, strength & resistance tests, AND probably most importantly, spend a fair amount of time talking and listening to you about what you are experiencing now and what you have in the past. One more thing, did he look at the MRI films or CD himself? Or did he only look at the written report?
What symptoms do you have now that you contribute to stress?
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