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Concerned with quality of tests--Dr. problem?
My 21 year old daughter has been through a couple of neurologists and has been handed off several times. The main problem we want addressed was leg weakness that evolved over a year to back, leg and knee pain. Her brain MRI is clear but the spinal MRI shows some sort of difficult to see lesion (missed on first reading) from T3/T4 to T7. Guesses as to what this could be have ranged from nothing to spinal fistula.
She's had chronic nausea and vomiting for a year and a half. In the last few months her near vision has become blurred--she reads by closing one eye. Also during this time she had eight weeks or so of urinary incontinence, the last three with bowel incontinence. She now is down now to urinary incontinence only 1 to 2 times a week. She was dx'ed with epilepsy at 14. After a four year hiatus of being med and seizure free, she once again developed seizures six months ago, under control with a therapeutic level of AEDs.
Her GP sent us to a new neurologist who conducted tests to investigate MS. He also tested for dysautonomia and narcolepsy as her EEG showed early REM. He said all the tests were fine except the narcolepsy test, which he said was not valid because she didn't get enough sleep in the nights before. I have now got the test results and am concerned about the quality and judgment of the doctor. He owns the labs that do the tests and signs the results.
Here are the results:
BAER Interpeak latency on left 2.42, right 2.46. Normal is 2.28. Probably normal. Plan: Should be repeated when she is not on clindamycin and doxycicline. What!??? She was taking these for an infection and he knew that. If they were going to interfere with the test results why not tell us to wait before testing instead of testing and recommending a retest?
VEP: P1000 at Oz was 114 ms on left, 115.8 on right. Right shows mild borderline prolongation--not clear abnormality using 32 checks. Plan: Patient apparently wears contacts--this needs to be assessed and evaluate. Recommend ophtalmologic evaluation and repeat of VEP. Again--What??? She should have had an eye exam before this test? Any neurologist checking someone's eyes can see contacts. Why couldn't he have told us this before?
Dysautonomia: A number of borderline low results. Abnormal change in heart rate from baseline to deep breathing. In the stand response she had a borderline decrease in blood pressure, suggesting preclinical orthostatic hypotension. An asterix raises the alternative possibility of baroreceptor reflex dysfunction because her heart rate was normal during stand. Orally (before we saw written results) he said that the test was fine but she was probably dehydrated; he didn't state what caused him to infer that. At least it doesn't suggest a re-test.
Overnight sleep test/multiple sleep latency: Sleep test normal, the MSLT shows two instances of short onset REM--diagnostic standard for narcolepsy. Interpretation: Nonconclusive due to improper protocol--patient not given any break between naps. (As I said above he blamed her for invalidity.) Recommendation: Repeat MLST as per protocol. What else--another re-test!
None of this gives me confidence. If there are pre-conditions to tests shouldn't we be told to avoid unnecessary testing? Not doing the MLST correctly gives me huge pause--he owns the sleep lab and it's done in his offices. Surely, these are done all the time--is there any excuse for this?
I hate to move from doctor to doctor but all these questionable tests are a red flag to me. Should we fire the doctor and move to another one? I will add that every time we go there he keeps insisting she has conflict because I want her to be in college and she's not there. I know she's not well enough to be in college and don't pressure her at all. I think this is code for him thinking her problems are psychogenic. I am not closed minded to this but I do rather loathe this being conveyed through intimation rather than directly and if he really thinks this why are all the recommendations for re-tests.?
She's had chronic nausea and vomiting for a year and a half. In the last few months her near vision has become blurred--she reads by closing one eye. Also during this time she had eight weeks or so of urinary incontinence, the last three with bowel incontinence. She now is down now to urinary incontinence only 1 to 2 times a week. She was dx'ed with epilepsy at 14. After a four year hiatus of being med and seizure free, she once again developed seizures six months ago, under control with a therapeutic level of AEDs.
Her GP sent us to a new neurologist who conducted tests to investigate MS. He also tested for dysautonomia and narcolepsy as her EEG showed early REM. He said all the tests were fine except the narcolepsy test, which he said was not valid because she didn't get enough sleep in the nights before. I have now got the test results and am concerned about the quality and judgment of the doctor. He owns the labs that do the tests and signs the results.
Here are the results:
BAER Interpeak latency on left 2.42, right 2.46. Normal is 2.28. Probably normal. Plan: Should be repeated when she is not on clindamycin and doxycicline. What!??? She was taking these for an infection and he knew that. If they were going to interfere with the test results why not tell us to wait before testing instead of testing and recommending a retest?
VEP: P1000 at Oz was 114 ms on left, 115.8 on right. Right shows mild borderline prolongation--not clear abnormality using 32 checks. Plan: Patient apparently wears contacts--this needs to be assessed and evaluate. Recommend ophtalmologic evaluation and repeat of VEP. Again--What??? She should have had an eye exam before this test? Any neurologist checking someone's eyes can see contacts. Why couldn't he have told us this before?
Dysautonomia: A number of borderline low results. Abnormal change in heart rate from baseline to deep breathing. In the stand response she had a borderline decrease in blood pressure, suggesting preclinical orthostatic hypotension. An asterix raises the alternative possibility of baroreceptor reflex dysfunction because her heart rate was normal during stand. Orally (before we saw written results) he said that the test was fine but she was probably dehydrated; he didn't state what caused him to infer that. At least it doesn't suggest a re-test.
Overnight sleep test/multiple sleep latency: Sleep test normal, the MSLT shows two instances of short onset REM--diagnostic standard for narcolepsy. Interpretation: Nonconclusive due to improper protocol--patient not given any break between naps. (As I said above he blamed her for invalidity.) Recommendation: Repeat MLST as per protocol. What else--another re-test!
None of this gives me confidence. If there are pre-conditions to tests shouldn't we be told to avoid unnecessary testing? Not doing the MLST correctly gives me huge pause--he owns the sleep lab and it's done in his offices. Surely, these are done all the time--is there any excuse for this?
I hate to move from doctor to doctor but all these questionable tests are a red flag to me. Should we fire the doctor and move to another one? I will add that every time we go there he keeps insisting she has conflict because I want her to be in college and she's not there. I know she's not well enough to be in college and don't pressure her at all. I think this is code for him thinking her problems are psychogenic. I am not closed minded to this but I do rather loathe this being conveyed through intimation rather than directly and if he really thinks this why are all the recommendations for re-tests.?
I went on a long business trip and did not see all the wonderful heartfelt responses to my inquiry after my last response until now.
You are the best! You are so encouraging and validating.
We have an appointment next week with a new neurologist my child's dentist recommended. She is university affiliated, but also has worked at the local Children's Hospital, so it looks like she'll bridge the gap between pediatric and adult.
I used to be so optimistic before seeing a new doctor, but I have to admit I am feeling a bit defeated after this last experience.
You are the best! You are so encouraging and validating.
We have an appointment next week with a new neurologist my child's dentist recommended. She is university affiliated, but also has worked at the local Children's Hospital, so it looks like she'll bridge the gap between pediatric and adult.
I used to be so optimistic before seeing a new doctor, but I have to admit I am feeling a bit defeated after this last experience.
Hi Marie and welcome,
I'll add my 2 cents and agree with the others about ditching your current neuro. Your instincts are right! A mother knows her own child better than anyone else. One of my children was chronically ill for years and I had to advocate for him to find the right docs and specialists. Continue trusting your gut!!
Find an MS specialist, if possible one who deals in childhood MS since she is only 21. As an aside, some people, including a few here on the forum, presented with epilepsy as their first symptom of MS. I AM MOT suggesting that this is the case with your daughter, just that it can be a symptom of MS.
You seem to be taking good care of her, meeting her physical and mental needs. As a fellow mom of a "sick kid" I applaud you! It gets wearisome after a few years but one must keep pressing on until the correct answer is found. It took us 18 years to finally get the correct diagnosis for my child. Hang in there!!!
Please keep us updated! We're here if you have anymore questions or concerns.
Ren
I'll add my 2 cents and agree with the others about ditching your current neuro. Your instincts are right! A mother knows her own child better than anyone else. One of my children was chronically ill for years and I had to advocate for him to find the right docs and specialists. Continue trusting your gut!!
Find an MS specialist, if possible one who deals in childhood MS since she is only 21. As an aside, some people, including a few here on the forum, presented with epilepsy as their first symptom of MS. I AM MOT suggesting that this is the case with your daughter, just that it can be a symptom of MS.
You seem to be taking good care of her, meeting her physical and mental needs. As a fellow mom of a "sick kid" I applaud you! It gets wearisome after a few years but one must keep pressing on until the correct answer is found. It took us 18 years to finally get the correct diagnosis for my child. Hang in there!!!
Please keep us updated! We're here if you have anymore questions or concerns.
Ren
I can only imagine how concerned you must be. Having a child who is unwell must be agony. I second what Kyle said. I don't think you or your daughter are best served staying with this neurologist. You've already shown patience and perseverance, but you may need to call on those strengths a little while longer. You're doing an amazing job, and you both deserve better.
Hi Marie- Welcome to our little forum.
In reading your posts a couple of things come to mind. The first is that you are doing an unbelievable job of coordinating your daughter's care. There are many things going on and it seems that you have a grasp of all of it.
There is much more here than I could intelligently comment, cuz I ain't a doc. There are many things in your description that are not typically related to MS. There are some things that are. Sorting them will take time and perseverance. Elizabeth Cohen, a medical correspondent on CNN has written a book called The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. It is a book I highly recommend. It was based on her personal experience navigating the medical world on behalf of her daughter.
Not he second thing that came to mind. Your neurologist needs to be replaced. His conflict of interest with the sleep study center is the first red flag. His readily available list explanations, all pointing away from him, is the second. His complete lack of awareness of your daughter's history/current condition is #3. TO me #3 is the most egregious. It results in unnecessary testing, wastes a lot of time and can cause unnecessary anxiety.
There are many among us who have gone through 4 or 5 neuros before finding the right one. DOn't quit, or settle!
Kyle
In reading your posts a couple of things come to mind. The first is that you are doing an unbelievable job of coordinating your daughter's care. There are many things going on and it seems that you have a grasp of all of it.
There is much more here than I could intelligently comment, cuz I ain't a doc. There are many things in your description that are not typically related to MS. There are some things that are. Sorting them will take time and perseverance. Elizabeth Cohen, a medical correspondent on CNN has written a book called The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. It is a book I highly recommend. It was based on her personal experience navigating the medical world on behalf of her daughter.
Not he second thing that came to mind. Your neurologist needs to be replaced. His conflict of interest with the sleep study center is the first red flag. His readily available list explanations, all pointing away from him, is the second. His complete lack of awareness of your daughter's history/current condition is #3. TO me #3 is the most egregious. It results in unnecessary testing, wastes a lot of time and can cause unnecessary anxiety.
There are many among us who have gone through 4 or 5 neuros before finding the right one. DOn't quit, or settle!
Kyle
Thanks for the views. I would find this all less of a red flag if he didn't actually own the labs and sign off on the tests.
Maybe it's a neuro thing, but anything that is abnormal he brushes off. Abnormalities in the dysautonomia testing must be because she is dehydrated. Abnormally high homocysteine must e a mistake and would have to be tested before anything is even thought about. Her hyporeflexia in her knees must be normal for her. Never mind that until a few months earlier she had been seen several times by people who knew what they were doing as hyper-reflexive.
We did not suggest MS to the neurologist; he put down possible MS in the prescriptions for the BAER and VEP.
She's been seeing a psychiatrist weekly for months for anxiety. She is a specialist in psychosomatic psychiatry, but from what I get from her, she doesn't seem to have a basis for saying her symptoms are psychogenic. Of course she won't rule it out either.
She has prescribed her psychotropic drugs that appear to give her neurological side effects--right side head and neck jerks that sometimes go further down her arm. Or perhaps this is a neurological symptom in its own right. Who knows? Daughter has to take Benzotropine to counter, for which I learn blurred vision can be a side effect. But the neuro did not raise this possibility; he just ordered the VEP. For bowel incontinence he suggested she see a gynecologist. My sister who is a nurse midwife said that was a nonsensical referral--gynos don't deal with such problems. While we were deliberating whether to try a GI doctor, it stopped.
She had a couple of seizures before getting to therapeutic levels of AEDs, and I watched as carefully as I could for signs of psychogenic origin. There is quite a lot of literature about this. (It is a bit difficult because things happen quickly and one has to detach oneself from one's child seizing.) .One instance I suspect could have been psychogenic but the other two I am quite sure were genuinely epileptic. She was found EEG positive for epilepsy when she was 14
Bottom line is that I think there is some underlying medical problem here, while there is also a psychogenic overlay caused in part by having had physical difficulties for too long. Oddly, her dentist, who does a lot of TMJ work, absolutely believes she has real chronic pain. He has said if we go to a neuro he knows (university affiliated), he'll coordinate her care. At this point, given the validating views here, I think I'll take him up on this. I'd rather have someone other than me complaining about sloppy tests.
Maybe it's a neuro thing, but anything that is abnormal he brushes off. Abnormalities in the dysautonomia testing must be because she is dehydrated. Abnormally high homocysteine must e a mistake and would have to be tested before anything is even thought about. Her hyporeflexia in her knees must be normal for her. Never mind that until a few months earlier she had been seen several times by people who knew what they were doing as hyper-reflexive.
We did not suggest MS to the neurologist; he put down possible MS in the prescriptions for the BAER and VEP.
She's been seeing a psychiatrist weekly for months for anxiety. She is a specialist in psychosomatic psychiatry, but from what I get from her, she doesn't seem to have a basis for saying her symptoms are psychogenic. Of course she won't rule it out either.
She has prescribed her psychotropic drugs that appear to give her neurological side effects--right side head and neck jerks that sometimes go further down her arm. Or perhaps this is a neurological symptom in its own right. Who knows? Daughter has to take Benzotropine to counter, for which I learn blurred vision can be a side effect. But the neuro did not raise this possibility; he just ordered the VEP. For bowel incontinence he suggested she see a gynecologist. My sister who is a nurse midwife said that was a nonsensical referral--gynos don't deal with such problems. While we were deliberating whether to try a GI doctor, it stopped.
She had a couple of seizures before getting to therapeutic levels of AEDs, and I watched as carefully as I could for signs of psychogenic origin. There is quite a lot of literature about this. (It is a bit difficult because things happen quickly and one has to detach oneself from one's child seizing.) .One instance I suspect could have been psychogenic but the other two I am quite sure were genuinely epileptic. She was found EEG positive for epilepsy when she was 14
Bottom line is that I think there is some underlying medical problem here, while there is also a psychogenic overlay caused in part by having had physical difficulties for too long. Oddly, her dentist, who does a lot of TMJ work, absolutely believes she has real chronic pain. He has said if we go to a neuro he knows (university affiliated), he'll coordinate her care. At this point, given the validating views here, I think I'll take him up on this. I'd rather have someone other than me complaining about sloppy tests.
Hi, there, and Welcome!
I'm sorry, but this new neuro doesn't sound any more promising than the others you've encountered.
Re: the BAER and VEP, the excuses he stated are BS. There is no prep for either of these exams, and contact lenses/glasses should be worn for the VEP.
https://healthonline.washington.edu/document/health_online/pdf/Visual-Evoked-Potential-%28VEP%29.pdf
I say, ditch this guy as soon as possible. There are so many other neuros who DO listen. Have you gone to a MS specialty clinic? Here's a good resource...
http://www.mscare.org/search/custom.asp?id=881
Just my $0.02
Good luck to your daughter. She deserves competent answers, and so do you.
I'm sorry, but this new neuro doesn't sound any more promising than the others you've encountered.
Re: the BAER and VEP, the excuses he stated are BS. There is no prep for either of these exams, and contact lenses/glasses should be worn for the VEP.
https://healthonline.washington.edu/document/health_online/pdf/Visual-Evoked-Potential-%28VEP%29.pdf
I say, ditch this guy as soon as possible. There are so many other neuros who DO listen. Have you gone to a MS specialty clinic? Here's a good resource...
http://www.mscare.org/search/custom.asp?id=881
Just my $0.02
Good luck to your daughter. She deserves competent answers, and so do you.
Marie,
One of the most important aspects of a doctor patient relationship is trust. From what you wrote it does sound like there is a definite lack of trust for this doctor. As such you probably should find another doctor.
Personally from what you wrote I too would have my reservations of continuing to see this doctor. I would also consider seeing a mental health professional in order to possibly getting that aspect off the table of probable cause for the symptoms.
Dennis
One of the most important aspects of a doctor patient relationship is trust. From what you wrote it does sound like there is a definite lack of trust for this doctor. As such you probably should find another doctor.
Personally from what you wrote I too would have my reservations of continuing to see this doctor. I would also consider seeing a mental health professional in order to possibly getting that aspect off the table of probable cause for the symptoms.
Dennis
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