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What Causes Numbness In Heel Along With Urinary Retention And Frequent Urination?
Question: I have numbness in my heal mainly on the left foot but slightly on the right foot; some numbness or decreased sensation in the upper part of my body on left side and sometimes in my hands. I have urinary retention, a small urine stream, and frequent urination. Based on symptoms and MRI evaluation, I was diagnosed with Multiple Sclerosis in March 2014, however I just received a 2nd opinion last week by another neurologist who believed I did not have MS at all and told me to go off of my Copaxone injections. Rather he believes I may have HSV Myelitis or Vericella Zoster Myelitis mostly because my lumber puncture was not indicative of MS and also because I had a shingles outbreak on my upper left arm in 2012. However, urinary symptoms were mildly experienced before the shingles, but the numbness in my foot was after this. My bladder is progressively getting worse so I need to find an answer and hopefully a resolution very soon. I am currently 46 years old and very healthy overall, but I am concerned about going off of the Copaxone due to fear of getting worse if it really is MS. Conversely, I do not want to focus on treating MS when I should be treating some other condition that could become much worse if not treated.
Brief Answer:
Diagnosis of MS
Detailed Answer:
MS cannot be diagnosed or not diagnosed on the basis of a spinal tap. That is not the standard by which we operate anymore. The most critical piece of diagnostic data anymore in order to HELP make the diagnosis of MS is the MRI of the brain or spinal cord. You never mentioned what the MRI showed. If there are typical or classical lesions in the brain or spinal cord of either a demyelinating type or XXXXXXX plaques then, with or without the spinal fluid it should be called MS if the rest of the clinical picture hangs together.
HSV or Varicella Zoster can be absolutely identified with quite a high degree of both sensitivity and specificity by PCR testing so there really should not be much of a doubt between those forms of myelitis and MS. Myelitis can certainly be a cause of bladder retention or incontinence. An EMG of the bladder can isolate the problem to tell whether it is the bladder, the nerves leading to the bladder, or something above those levels.
Again, using cerebrospinal fluid to either make or break the diagnosis of MS is not considered up to date standards for diagnosing MS so if that's the other neurologist's best explanation at why he is not impressed with the first's diagnosis I would ask for much more support by examination results, testing results, or other diagnostic tests.
I guess if I were in your shoes I'd share the same opinion of not wanting to be on medication if at all possible.
I hope these suggestions and opinions satisfactorily address your question and give some additional information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other comments, may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to direct more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 50 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Diagnosis of MS
Detailed Answer:
MS cannot be diagnosed or not diagnosed on the basis of a spinal tap. That is not the standard by which we operate anymore. The most critical piece of diagnostic data anymore in order to HELP make the diagnosis of MS is the MRI of the brain or spinal cord. You never mentioned what the MRI showed. If there are typical or classical lesions in the brain or spinal cord of either a demyelinating type or XXXXXXX plaques then, with or without the spinal fluid it should be called MS if the rest of the clinical picture hangs together.
HSV or Varicella Zoster can be absolutely identified with quite a high degree of both sensitivity and specificity by PCR testing so there really should not be much of a doubt between those forms of myelitis and MS. Myelitis can certainly be a cause of bladder retention or incontinence. An EMG of the bladder can isolate the problem to tell whether it is the bladder, the nerves leading to the bladder, or something above those levels.
Again, using cerebrospinal fluid to either make or break the diagnosis of MS is not considered up to date standards for diagnosing MS so if that's the other neurologist's best explanation at why he is not impressed with the first's diagnosis I would ask for much more support by examination results, testing results, or other diagnostic tests.
I guess if I were in your shoes I'd share the same opinion of not wanting to be on medication if at all possible.
I hope these suggestions and opinions satisfactorily address your question and give some additional information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other comments, may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to direct more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 50 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I'm sorry I didn't address the MRI results in my first question. To answer this, the doctor that diagnosed me with MS has stated that I have 12 lesions on my Brain MRI. I wanted to make sure that I indeed had MS since this was a life-changing diagnosis, and I wanted to treat it appropriately. So I saw a 2nd neurologist shortly after and he stated he only saw 'a couple' of small lesions, which was not unusual for my age and he did not feel that I had MS. However, he was uncertain of what was causing my symptoms. It was unsettling that 1 doctor stated I definitively did have MS and another to state that I definitively did not have MS. I was unsure of what path to take, so to be safe I went over a year accepting the diagnosis of MS. However, last week I saw a top neurologist at Vanderbilt in XXXXXXX TN. AFTER he stated he believed my symptoms were indicative of the viral myelitis rather than MS, I asked him to please also look at my MRI. He stated that he did not see ANY lesions on my brain MRI and needed to see a lumbo-sacral MRI or a thoracic MRI in order to make a more accurate diagnosis of the myelitis. Once again, I was completely confused when I left this doctors office. I did a follow up study of the different types of myelitis and realize the sooner it is treated the better, but I'm afraid to go off of the Copaxone until I know.
Brief Answer:
I understand your dilemma- Now you've got to decide
Detailed Answer:
So in other words you just recently saw someone who you are saying has the reputation of being a "top neurologist at Vanderbilt" University. You did not say that they were a TOP NEUROLOGIST WHO SPECIALIZES IN MS at Vanderbilt. Did you mean to say that? Because they certainly do have such people there that you could make appointments with if you chose to do so.
At any rate, the "tiebreaker" neurologist concluded after seeing you, that your diagnosis was.....drum roll please.......VIRAL MYELITIS. I find it a little "confusing" to use your terminology that a TOP NEUROLOGIST would have to be encouraged or invited by the patient to ALSO LOOK at the MRI films after having come up with the diagnosis. This is simply going on the basis of how you presented everything on your timeline. And so in my mind...it's interesting that the neurologist could've come to any conclusions about your symptoms of myelitis WITHOUT having consulted films. You state that you asked him to look at your films after he already told you he thought you had a viral myelitis, right?
My habit whenever dealing with a patient (especially one coming to me from an outside institution or facility) who is looking for a 2nd opinion ON ANYTHING is to make sure they are bringing to me any and ALL studies that have been done such as CT, MRI, MRA, PET, SPECT, ULTRASOUND, etc. of the head, the neck, the spine, the orbits, the sinuses,.....you get the picture. I also ask for any and all labs and other tests such as EEG, EMG/NCV, Autonomic Function studies, Tilt table tests, etc. I then, see the patient, take a full history, do a full examination, look at all the tests and studies they have brought, and finally, MAKE A DIAGNOSIS based on the information at hand. If I feel that the diagnosis could be better made if I would have an additional study "x, y, or z" then, I inform the patient that if they choose to perform these additional studies then, I may be able to either firm up or adjust my diagnosis to that point.
In this particular case, if it were me I may have told you that based upon my initial review and findings I believe you have VIRAL MYELITIS but that MRI's (with gadolinium contrast) would be helpful to see of both the thoracic and lumbosacral spines in order to draw more confident conclusions. I'm assuming you already had cervical spine films done and showed them to him as well? And that's the reason he's not asking for them?
Now, that would be my particular sequence of actions using what I believe the most comprehensive approach to anybody seeking 2nd opinion information from my practice or my clinic.
Therefore, I can understand your dilemma of having what seemingly are 3 differing opinions but in all honesty, to me-- the last one would be the only one that really counted IF YOU HAVE FAITH AND TRUST HIS OPINION as a "top neurologist" from Vanderbilt. If he has already told you that continuing to take Copaxone is not going to be of any value to treating the myelitis and he is able to SHOW YOU on the MR studies the localization of that myelitic lesion (means that this is fully contained in the spinal cord)....again, I'm assuming that the neurologist from Vanderbilt concurs with the 2nd neurologist who said that there were no significant lesions or plaques in your head......well, then, that's your diagnosis and if I were in your position I would ask about the standard of treatment for myelitis in his opinion so that I may get started right away.
By this point (way long time ago) I would've also asked for a copy of the very first MRI report that I initially got which started this whole thing over a year ago to verify what the 1st neurologist was saying about there being MULTIPLE LESIONS in the brain. The definition of these "spots" nowadays is different radiographically than it was in the past. Now, if there are multiple smaller lesions and they show up on what is called a T2 sequence in a contrasted MRI of the head then, it is appropriate to count them and use that count as a way of diagnosing MS but that of course, would also be taking into consideration other factors that could cause lesions in your brain as a 46 year old female such as "age" as the one neurologist so delicately put it...right? HA!.....smoking history, presence or not of things such as hypertension, diabetes, hypercholesterolemia, kidney disease, and any other metabolic diseases that could cause these "spots" to appear.
But again, (though you've not specifically said so)....it would seem that the guy from Vanderbilt is agreeing with the 2nd neurologist that you do not have any such significant lesions in the brain and that the first neurologist's assessment of that particular situation was in error as far as interpreting the film was concerned. But again, I must ask the question, "What did the FIRST MRI REPORT actually state in its description of the brain, the lesions/spots, and what did the conclusion read as per the radiologist's point of view? Many neurologists never even look at the MRI scans obtained on patients. They simply go on the basis of what the radiologist sees and ultimately writes. I think that's potentially a trap since the neurologist's entirely depending upon a radiologist to make THE DIAGNOSIS.
I always encourage doctors in training (and colleagues whenever I speak at meetings or grand rounds events) to look at their own films and learn to at least read the basics. If something is seen that is not understood then, physically take the film down to the radiologist and have him read it with you. I think that is perfectly appropriate and educational.
But as you can imagine that last step in the equation is never done with any regularity except at teaching hospitals and even then, it really depends upon the thresh hold of the attending as to whether they want to take the time to trudge all the way down to wherever that department is and try to track down the person who read the film and go through it with it...assuming that radiologist even has the time to allow 10 people in short white coats plus an OLD one called MOTHER HEN to steam into his reading area and disrupt whatever he was doing to read a study that's already available on the dictation system!
See why one neurologist may say there are lesions and another does not?
So the bottom line is this.....YOU and only you can make the decision as to whether or not the tiebreaker neurologist carries more weight and authority for getting the diagnosis "right" or does it revert back to the 1st neurologist (who it sounds to me you've dismissed as having not gotten the right diagnosis since he's seemingly got 2 other doctors disagreeing with him)? The problem is you're not willing to let the Copaxone go but you have to decide which neurologist gets the nod.
Perhaps yet one more option is for you to return to the final neurologist with a list of 3 or 4 (not 20 or 25).....just 3 or 4 questions asking him to please comment on lesions in the brain (if any), gravity of those lesions if present, and then, to show you the lesion of the MYELITIS which should be easily seen in the scans and whether or not he is sure of your diagnosis on the basis of the studies already obtained or whether you should undergo any other testing before making the final call.
Finally, (if there's time left) you can ask him to explain the differences in treatment between MYELITIS and using COPAXONE and whether in his opinion (and if these films were either his or his mother's) HE would be on your drug treatment program knowing what he knows at this time.
If his answer is, "I would not be treating myself with Copaxone based on everything I know about you" then, you've got your answer. If he doesn't definitively renounce that treatment option then, that says that he is not as secure about the diagnosis of myelitis as you're believing he is and maybe you should go back to the 1st neurologist with all this new information from Vanderbilt and say look, "Show me the LESIONS?....." You can take the medical notes from the 2nd and 3rd neurologists that are denying these lesions in the brain and put the responsibility on the first neurologist to show you the money so to speak....make sense?
I hope these suggestions and opinions satisfactorily address your question and give even more information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other comments, may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to direct more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 108 minutes of physician specific time to read, research, and compile a return envoy to the patient.
I understand your dilemma- Now you've got to decide
Detailed Answer:
So in other words you just recently saw someone who you are saying has the reputation of being a "top neurologist at Vanderbilt" University. You did not say that they were a TOP NEUROLOGIST WHO SPECIALIZES IN MS at Vanderbilt. Did you mean to say that? Because they certainly do have such people there that you could make appointments with if you chose to do so.
At any rate, the "tiebreaker" neurologist concluded after seeing you, that your diagnosis was.....drum roll please.......VIRAL MYELITIS. I find it a little "confusing" to use your terminology that a TOP NEUROLOGIST would have to be encouraged or invited by the patient to ALSO LOOK at the MRI films after having come up with the diagnosis. This is simply going on the basis of how you presented everything on your timeline. And so in my mind...it's interesting that the neurologist could've come to any conclusions about your symptoms of myelitis WITHOUT having consulted films. You state that you asked him to look at your films after he already told you he thought you had a viral myelitis, right?
My habit whenever dealing with a patient (especially one coming to me from an outside institution or facility) who is looking for a 2nd opinion ON ANYTHING is to make sure they are bringing to me any and ALL studies that have been done such as CT, MRI, MRA, PET, SPECT, ULTRASOUND, etc. of the head, the neck, the spine, the orbits, the sinuses,.....you get the picture. I also ask for any and all labs and other tests such as EEG, EMG/NCV, Autonomic Function studies, Tilt table tests, etc. I then, see the patient, take a full history, do a full examination, look at all the tests and studies they have brought, and finally, MAKE A DIAGNOSIS based on the information at hand. If I feel that the diagnosis could be better made if I would have an additional study "x, y, or z" then, I inform the patient that if they choose to perform these additional studies then, I may be able to either firm up or adjust my diagnosis to that point.
In this particular case, if it were me I may have told you that based upon my initial review and findings I believe you have VIRAL MYELITIS but that MRI's (with gadolinium contrast) would be helpful to see of both the thoracic and lumbosacral spines in order to draw more confident conclusions. I'm assuming you already had cervical spine films done and showed them to him as well? And that's the reason he's not asking for them?
Now, that would be my particular sequence of actions using what I believe the most comprehensive approach to anybody seeking 2nd opinion information from my practice or my clinic.
Therefore, I can understand your dilemma of having what seemingly are 3 differing opinions but in all honesty, to me-- the last one would be the only one that really counted IF YOU HAVE FAITH AND TRUST HIS OPINION as a "top neurologist" from Vanderbilt. If he has already told you that continuing to take Copaxone is not going to be of any value to treating the myelitis and he is able to SHOW YOU on the MR studies the localization of that myelitic lesion (means that this is fully contained in the spinal cord)....again, I'm assuming that the neurologist from Vanderbilt concurs with the 2nd neurologist who said that there were no significant lesions or plaques in your head......well, then, that's your diagnosis and if I were in your position I would ask about the standard of treatment for myelitis in his opinion so that I may get started right away.
By this point (way long time ago) I would've also asked for a copy of the very first MRI report that I initially got which started this whole thing over a year ago to verify what the 1st neurologist was saying about there being MULTIPLE LESIONS in the brain. The definition of these "spots" nowadays is different radiographically than it was in the past. Now, if there are multiple smaller lesions and they show up on what is called a T2 sequence in a contrasted MRI of the head then, it is appropriate to count them and use that count as a way of diagnosing MS but that of course, would also be taking into consideration other factors that could cause lesions in your brain as a 46 year old female such as "age" as the one neurologist so delicately put it...right? HA!.....smoking history, presence or not of things such as hypertension, diabetes, hypercholesterolemia, kidney disease, and any other metabolic diseases that could cause these "spots" to appear.
But again, (though you've not specifically said so)....it would seem that the guy from Vanderbilt is agreeing with the 2nd neurologist that you do not have any such significant lesions in the brain and that the first neurologist's assessment of that particular situation was in error as far as interpreting the film was concerned. But again, I must ask the question, "What did the FIRST MRI REPORT actually state in its description of the brain, the lesions/spots, and what did the conclusion read as per the radiologist's point of view? Many neurologists never even look at the MRI scans obtained on patients. They simply go on the basis of what the radiologist sees and ultimately writes. I think that's potentially a trap since the neurologist's entirely depending upon a radiologist to make THE DIAGNOSIS.
I always encourage doctors in training (and colleagues whenever I speak at meetings or grand rounds events) to look at their own films and learn to at least read the basics. If something is seen that is not understood then, physically take the film down to the radiologist and have him read it with you. I think that is perfectly appropriate and educational.
But as you can imagine that last step in the equation is never done with any regularity except at teaching hospitals and even then, it really depends upon the thresh hold of the attending as to whether they want to take the time to trudge all the way down to wherever that department is and try to track down the person who read the film and go through it with it...assuming that radiologist even has the time to allow 10 people in short white coats plus an OLD one called MOTHER HEN to steam into his reading area and disrupt whatever he was doing to read a study that's already available on the dictation system!
See why one neurologist may say there are lesions and another does not?
So the bottom line is this.....YOU and only you can make the decision as to whether or not the tiebreaker neurologist carries more weight and authority for getting the diagnosis "right" or does it revert back to the 1st neurologist (who it sounds to me you've dismissed as having not gotten the right diagnosis since he's seemingly got 2 other doctors disagreeing with him)? The problem is you're not willing to let the Copaxone go but you have to decide which neurologist gets the nod.
Perhaps yet one more option is for you to return to the final neurologist with a list of 3 or 4 (not 20 or 25).....just 3 or 4 questions asking him to please comment on lesions in the brain (if any), gravity of those lesions if present, and then, to show you the lesion of the MYELITIS which should be easily seen in the scans and whether or not he is sure of your diagnosis on the basis of the studies already obtained or whether you should undergo any other testing before making the final call.
Finally, (if there's time left) you can ask him to explain the differences in treatment between MYELITIS and using COPAXONE and whether in his opinion (and if these films were either his or his mother's) HE would be on your drug treatment program knowing what he knows at this time.
If his answer is, "I would not be treating myself with Copaxone based on everything I know about you" then, you've got your answer. If he doesn't definitively renounce that treatment option then, that says that he is not as secure about the diagnosis of myelitis as you're believing he is and maybe you should go back to the 1st neurologist with all this new information from Vanderbilt and say look, "Show me the LESIONS?....." You can take the medical notes from the 2nd and 3rd neurologists that are denying these lesions in the brain and put the responsibility on the first neurologist to show you the money so to speak....make sense?
I hope these suggestions and opinions satisfactorily address your question and give even more information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
Also, if there are no other comments, may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to direct more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 108 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I probably should have said the doctor that referred me to the "tiebreaker" neurologist stated that Dr. HSM was one of the "top 10 neurologist specializing in MS in the country" who practices at Vanderbilt. Therefore this may be one of the doctors that you are referring to that I could make an appointment to see.
I was very disturbed that I had to ask a TOP NEUROLOGIST to look at my MRI in order to confirm that he did not see lesions indicative of MS. He actually stated he didn't need to look at it because he knew I didn't have MS based on the symptoms I described in my first query to you. He stated he has had to see many patients that Dr. MS has diagnosed with MS but they do not actually have MS. However, I felt he was dismissing the fact that I could ACTUALLY have MS just because this other particular MS specialist has a reputation of being MS diagnosis happy! He asked me if I had HSV and I stated that I have had it for 25 years. He asked several questions regarding the timing of my symptoms in relation to the 'shingles' outbreak on my right arm. That being said, it is correct that he did not look at the MRI until I requested him to do so AFTER he stated my symptoms were related to a viral myelitis rather than MS. In my research after this appointment, I realized that based on symptoms alone it could still be either of the two conditions and since he couldn't verify it, I continue as before....
I have not had the following performed CT, MRA, PET, SPECT, ULTRASOUND, etc. of the head, the neck, the spine, the orbits, the sinuses, etc. I have also not had an EEG or EMG (of the bladder or otherwise), Autonomic Function studies, Tilt table tests, etc. but I did have an NCV performed at the initial neurologists office and it showed 50% reduction in relay speed for my left face, right chest, left arm and both legs. However, when I told Dr. HSM I had the results of this test, he stated there could be user error in these type of tests so he doesn't review them from another office as a diagnostic tool. At this point, I would be willing to perform ANY additional studies in order to firm up either of the diagnoses. I should mention that I did have urodynamic testing but it did not confirm if it was a problem the bladder itself, the nerves leading to the bladder, or something above those levels.
My initial MRIs (performed in my hometown rather than at Vanderbilt) were Brain w/wo contrast, Cervical, Thoracic and Lumbar - no Lumbosacral because the LNP did not request it during the initial ordering of MRI's. However, after Dr. MS diagnosed me with MS, he requested a Brain/Cervical MRI after that time, but no other views. According to Dr. HSM, the initial Thoracic and Lumbar images were 'horrible' and had no axial view and he could not tell anything from them. From my perspective, he did not see anything that confirmed or denied the presence of either condition but he seemed to just know what it was without any evidence. This was all very strange to me, but maybe he is just that smart....?
He didn't even tell me what the treatment is for viral myelitis, but I have since read what the treatment protocol is. He told me I would need a new thoracic and lumbosacral MRI and also a new Lumbar Puncture performed to verify the myelitis, but did not mention any other tests such as PCR which you mentioned and I have read about.
I just don't understand how Dr. MS could say I have 12 lesions if there aren't any.... In fact, he became very upset with me when I shared Dr. NoMS' 2nd opinion with him. He stated that if I went off of the Copaxone that I would see degenerative effects within 5 years and argued that he is excellent at reading MRIs and he is Board Certified to read MRIs. He was not happy that another doctor told me that I did not have MS! In fact, I asked him to contact Dr. NoMS to discuss with him and he did. Dr. NoMS asked him to send MRIs verifying the location of the lesions, however, he never forwarded them on to him. I do have a printed hard copy of the images with arrows pointing to the lesions that Dr. MS found on my MRI, but I can't tell what they are because I am not Board Certified to read MRIs! I also have his hard copy notes detailing his findings as significant.
I don't know how you would define these "spots". They are definitely small if they exist and they are not bright. I don't know if they show up on a T2 sequence in a contrasted MRI Taking other factors into consideration that could cause lesions in your brain. BTW I know I am a 'young' 46 year old female that looks too healthy to have anything at all wrong with her. I have never smoked; I have a great blood pressure usually 100/70 range; diabetes is in my family (mother and grandmother) but my blood sugar is stable; hypercholesterolemia - ( I did have a weird significant spike in my cholesterol about 1-1/2 year ago but that has since gone back down); kidney disease (I hope not!)
I just want a definitive answer so I can treat it. You have brought up great points/questions, but I don't personally have knowledge of which one of these doctors are correct in my diagnosis.
I was very disturbed that I had to ask a TOP NEUROLOGIST to look at my MRI in order to confirm that he did not see lesions indicative of MS. He actually stated he didn't need to look at it because he knew I didn't have MS based on the symptoms I described in my first query to you. He stated he has had to see many patients that Dr. MS has diagnosed with MS but they do not actually have MS. However, I felt he was dismissing the fact that I could ACTUALLY have MS just because this other particular MS specialist has a reputation of being MS diagnosis happy! He asked me if I had HSV and I stated that I have had it for 25 years. He asked several questions regarding the timing of my symptoms in relation to the 'shingles' outbreak on my right arm. That being said, it is correct that he did not look at the MRI until I requested him to do so AFTER he stated my symptoms were related to a viral myelitis rather than MS. In my research after this appointment, I realized that based on symptoms alone it could still be either of the two conditions and since he couldn't verify it, I continue as before....
I have not had the following performed CT, MRA, PET, SPECT, ULTRASOUND, etc. of the head, the neck, the spine, the orbits, the sinuses, etc. I have also not had an EEG or EMG (of the bladder or otherwise), Autonomic Function studies, Tilt table tests, etc. but I did have an NCV performed at the initial neurologists office and it showed 50% reduction in relay speed for my left face, right chest, left arm and both legs. However, when I told Dr. HSM I had the results of this test, he stated there could be user error in these type of tests so he doesn't review them from another office as a diagnostic tool. At this point, I would be willing to perform ANY additional studies in order to firm up either of the diagnoses. I should mention that I did have urodynamic testing but it did not confirm if it was a problem the bladder itself, the nerves leading to the bladder, or something above those levels.
My initial MRIs (performed in my hometown rather than at Vanderbilt) were Brain w/wo contrast, Cervical, Thoracic and Lumbar - no Lumbosacral because the LNP did not request it during the initial ordering of MRI's. However, after Dr. MS diagnosed me with MS, he requested a Brain/Cervical MRI after that time, but no other views. According to Dr. HSM, the initial Thoracic and Lumbar images were 'horrible' and had no axial view and he could not tell anything from them. From my perspective, he did not see anything that confirmed or denied the presence of either condition but he seemed to just know what it was without any evidence. This was all very strange to me, but maybe he is just that smart....?
He didn't even tell me what the treatment is for viral myelitis, but I have since read what the treatment protocol is. He told me I would need a new thoracic and lumbosacral MRI and also a new Lumbar Puncture performed to verify the myelitis, but did not mention any other tests such as PCR which you mentioned and I have read about.
I just don't understand how Dr. MS could say I have 12 lesions if there aren't any.... In fact, he became very upset with me when I shared Dr. NoMS' 2nd opinion with him. He stated that if I went off of the Copaxone that I would see degenerative effects within 5 years and argued that he is excellent at reading MRIs and he is Board Certified to read MRIs. He was not happy that another doctor told me that I did not have MS! In fact, I asked him to contact Dr. NoMS to discuss with him and he did. Dr. NoMS asked him to send MRIs verifying the location of the lesions, however, he never forwarded them on to him. I do have a printed hard copy of the images with arrows pointing to the lesions that Dr. MS found on my MRI, but I can't tell what they are because I am not Board Certified to read MRIs! I also have his hard copy notes detailing his findings as significant.
I don't know how you would define these "spots". They are definitely small if they exist and they are not bright. I don't know if they show up on a T2 sequence in a contrasted MRI Taking other factors into consideration that could cause lesions in your brain. BTW I know I am a 'young' 46 year old female that looks too healthy to have anything at all wrong with her. I have never smoked; I have a great blood pressure usually 100/70 range; diabetes is in my family (mother and grandmother) but my blood sugar is stable; hypercholesterolemia - ( I did have a weird significant spike in my cholesterol about 1-1/2 year ago but that has since gone back down); kidney disease (I hope not!)
I just want a definitive answer so I can treat it. You have brought up great points/questions, but I don't personally have knowledge of which one of these doctors are correct in my diagnosis.
Brief Answer:
Very sorry that you are in the unenviousness position of doubt you're in
Detailed Answer:
I must agree with your points of view and I am too surprised that an expert who is a supposed renowned scientist should fail to adhere to some of the most basic principles of practicing medicine which is to first be sure you fulfill the expectation levels of the patient you are seeing, especially if that person is coming to you through recommendation and over a great distance due to your reputation. I would literally "bend over backwards" to make sure no rock was overturned. However, I guess that's not everybody's perspective.
I kind of say this tongue in cheek...but in a way I'm half serious when I tell you that if you catch I-77 and just head North until it literally dumps you into Lake Erie- you will then, be virtually on top of the Rock 'N Roll Hall of Fame, the Browns Football Stadium, and the world famous Home to the XXXXXXX Orchestra! I would be honored to get things squared away for you and be the quarterback to make sure that the people who need to see you do just that.
I don't know who the best person is to believe in this type of situation but I guess if we examine everything very coldly and freely one would have to go with the person who has the very best individual base of knowledge (or at least seems to) and the reputation who works for an academic institution. I don't think it makes sense to go back with someone who you were looking to "get away" from in the first place, right?
If you could post the scans and copy of the report then, I would be happy to give you my opinions on the images if you'd like. And then, consider heading NORTH! LoL.
I hope these suggestions and opinions satisfactorily address your question and give even more information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
With this being the 4th question in this series of queries may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to make DIRECT more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 123 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Very sorry that you are in the unenviousness position of doubt you're in
Detailed Answer:
I must agree with your points of view and I am too surprised that an expert who is a supposed renowned scientist should fail to adhere to some of the most basic principles of practicing medicine which is to first be sure you fulfill the expectation levels of the patient you are seeing, especially if that person is coming to you through recommendation and over a great distance due to your reputation. I would literally "bend over backwards" to make sure no rock was overturned. However, I guess that's not everybody's perspective.
I kind of say this tongue in cheek...but in a way I'm half serious when I tell you that if you catch I-77 and just head North until it literally dumps you into Lake Erie- you will then, be virtually on top of the Rock 'N Roll Hall of Fame, the Browns Football Stadium, and the world famous Home to the XXXXXXX Orchestra! I would be honored to get things squared away for you and be the quarterback to make sure that the people who need to see you do just that.
I don't know who the best person is to believe in this type of situation but I guess if we examine everything very coldly and freely one would have to go with the person who has the very best individual base of knowledge (or at least seems to) and the reputation who works for an academic institution. I don't think it makes sense to go back with someone who you were looking to "get away" from in the first place, right?
If you could post the scans and copy of the report then, I would be happy to give you my opinions on the images if you'd like. And then, consider heading NORTH! LoL.
I hope these suggestions and opinions satisfactorily address your question and give even more information that you can discuss with the doctor for consideration. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?
With this being the 4th question in this series of queries may I ask you not forget to CLOSE THE QUERY on your end so the question can be transacted and archived for further reference by colleagues as necessary?
You are invited to make DIRECT more comments or inquiries to me in the future by going to my web address at:
bit.ly/drdariushsaghafi
I would be honored to answer you quickly and comprehensively.
Please keep me informed as to the outcome of your situation.
The query has required a total of 123 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Note: For further follow up on related General & Family Physician Click here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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