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MS symtoms with Negtive LP
Hi all,
My LP came back negative. My family doctor feels that I have MS due to "classic symptoms" and abnormal neuro exam but MS specialist was totally convinced and he will not treat without positive LP. I'm quite spastic, hyper reflexes (right side only) but testing for "stiff man syndrome" was negative". I have classic MS symptoms including , heat intolerance, bowel and bladder problems, neuropathy/paresthesia, right sided weakness with ataxia, enlarge optic disc. I know other diseases can imitate MS . He feels the Ataxia maybe the cause of a genetic disease
MRI without contrast of brain abnormal revealed" Multiple scattered foci T2 hyperintensity: Mild burden of nonspecific supratentorial white matter changes and more extensive network of prominent perivascular space particularly near the vertex involving frontal and parietal lobes", Abnormal evoke potential. Negative lesions for thoracic and cervical and negative . Also have extreme fatigue that causes my left eye to droop but has not responded to Myasthenia gravis medicine. The mystery goes on. I go to Johns Hopkins 7/7 for more answers. This has been debilitating and I have been off work due to the extreme fatigue and gait abnormality for almost 3 months now. Happy mother's day for all the mothers and caregivers on this forum.
My LP came back negative. My family doctor feels that I have MS due to "classic symptoms" and abnormal neuro exam but MS specialist was totally convinced and he will not treat without positive LP. I'm quite spastic, hyper reflexes (right side only) but testing for "stiff man syndrome" was negative". I have classic MS symptoms including , heat intolerance, bowel and bladder problems, neuropathy/paresthesia, right sided weakness with ataxia, enlarge optic disc. I know other diseases can imitate MS . He feels the Ataxia maybe the cause of a genetic disease
MRI without contrast of brain abnormal revealed" Multiple scattered foci T2 hyperintensity: Mild burden of nonspecific supratentorial white matter changes and more extensive network of prominent perivascular space particularly near the vertex involving frontal and parietal lobes", Abnormal evoke potential. Negative lesions for thoracic and cervical and negative . Also have extreme fatigue that causes my left eye to droop but has not responded to Myasthenia gravis medicine. The mystery goes on. I go to Johns Hopkins 7/7 for more answers. This has been debilitating and I have been off work due to the extreme fatigue and gait abnormality for almost 3 months now. Happy mother's day for all the mothers and caregivers on this forum.
You are awesome. Thank you very much for your expertise and insight. I've had these symptoms for years with periods of exacerbation andremissions. The ataxic gait and ptosis due to the fatigue are the newest symptoms x8 months now. I have good day and not so good days. Yes I go to John Hopkins in July 7 as a new patient but currently seeing local MS specialist. . I promise to keep you posted You are a wonderful asset to this forum and I'm truly grateful.
Ooops! I didn't understand the implication of 7/7. So, all may disregard my references to JH. However, I stand by y comments abut what has been said to Massie up 'til now. To whomever has been so weird about treating.....You're wrong!
Sorry. My bad
Q :(
I have misread a couple things recently. Perhaps I should restrain my exuberance in the future. I think my medical mind is slipping.
Sorry. My bad
Q :(
I have misread a couple things recently. Perhaps I should restrain my exuberance in the future. I think my medical mind is slipping.
Given my past issues with Hopkins and my polite wrangling with my current neuro there over his strange definition of pseudo-relapse, I'm not wild over having to defend JH here, but in fairness I must.
From my reading of Massie's posts above, she hasn't yet seen anyone at Hopkins, but has an appt. in July. And then, apparently, it isn't with an MS neuro. So Hopkins doesn't yet figure into the equation here, if I've read it right.
I'm still with them at JH mainly because I've been diagnosed for quite a few years now and another doctor or facility couldn't really do more than is already being done. I did have a course of IVSM there recently (didn't help), ordered by this guy regardless of his definitions. Until recently I'd been seen by someone great (she left) and an emergency situation isn't really the time to start neuro-shopping elsewhere. Had to take what I could get.
That said, I find Hopkins' bureaucracy as a huge place extremely annoying, and its self-aggrandizement even more so. But it does have some outstanding doctors, even neuro doctors, even MS ones.
ess
From my reading of Massie's posts above, she hasn't yet seen anyone at Hopkins, but has an appt. in July. And then, apparently, it isn't with an MS neuro. So Hopkins doesn't yet figure into the equation here, if I've read it right.
I'm still with them at JH mainly because I've been diagnosed for quite a few years now and another doctor or facility couldn't really do more than is already being done. I did have a course of IVSM there recently (didn't help), ordered by this guy regardless of his definitions. Until recently I'd been seen by someone great (she left) and an emergency situation isn't really the time to start neuro-shopping elsewhere. Had to take what I could get.
That said, I find Hopkins' bureaucracy as a huge place extremely annoying, and its self-aggrandizement even more so. But it does have some outstanding doctors, even neuro doctors, even MS ones.
ess
Hi, I have a short break before Mother's Day dinner.
I respect your primary care doc's view of the "whole picture".
JH guy is counting all the trees and giving them all names. Shame on him. Good, tight medical thinking mandates that after looking for appropriate Zebra's you choose a diagnosis that will explain all (or the vast majority) of a patient's complaints, symptoms, physical signs on exam and any positives from diagnostic testing and imaging. So your doc looked at the ataxia and is considering a diagnosis just for that? Shame on him!
Your docs have looked at the regular MS mimics and have ventured into the realm of weird and rare entities and not found anything. So, you have spasticity (in all limbs?), asymmetrical reflexes, urinary and bowel problems, ataxia, asymmetrical weakness, heat intolerance and probably fatigue (yes?). Plus an "enlarged" optic disc.
These are ALL classic and very common problems in MS. If some of the symptoms arrived at separate times then you have MS whether or not the MRI or LP is positive. That is per the McDonald Criteria.
Have you had at least two occasions in which one or more new symptoms showed up and lasted at minimum of 24 hours and then either ever improved or stabilized? Then, at least 30 days after the first symptoms showed up did a new symptom(s) in a different part of the body show up and last at least 24 hours?
If you can say yes to those questions you have MS, even if the MRI is negative (which it obviously is not) and if the LP is negative. Your MRI has provided confirmatory evidence. Ma'am, you are there. The LP would have been done for completeness. It can NEVER, EVER determine that this is not MS. The spinal evidence can provide further confirmation, but a negative one cannot rule it out. I can't even guess what the JH guy is even thinking, unless he will only acknowledge "perfect" presentations of MS so he can reinforce his own lazy thinking, ie. "ALL of my patients have positive MRIs and LPs". This is called a self-fulfilling prophecy or a self-confirmation of his own brilliance. We have seen this before.
In the best interpretation of the role of the LP in diagnosing MS, one can only say that 96% of patients with RRMS have a positive LP (by showing Oligoclonal Bands). Those numbers come from highly standardized studies with extremely well-trained lab techs assessing the presence or absence of O-Bands. As I have said before, not all techs are so skilled. Also, not all tests are perfectly reproducible. Maybe the good tech was out of the office and the stand-in wasn't as good. Lab results are not absolutes. Out in the real world the presence of O-bands is felt to be between 90% and 95%. Not to mention that people with PPMS will have negative LPs as much 40% of the time!
So this guy is willing to miss 1 in 25 people with MS by being more rigid in his use of the LP results than is recommended by the best minds in the field. Wow, I am so impressed. I suspect that he is either arrogant or lazy or both. I wonder who he thinks he is and how comfortable he is with someone having your level of symptomatology.
I am being very generous, when the odds are actually more like 1 in 15 for the LP showing oligoclonal bands.
Would an immunologist be willing to miss 1 in 25(15) of people with HIV?
Would an oncologist be willing to miss 1 in 25(15) cancers?
Would an endocrinologist be willing to miss 1 in 25(15) people with Diabetes?
I think you are in the wrong hands and would strongly recommend that you seek another MS neurologist away from the JH realm of influence. Though it is possible that this guy is just a self-obsessed out-lier and that the other docs will look at your info as they should, I am always suspicious of the institutions like JH who take themselves very seriously and believe that because they are at the "hallowed place" that they are smarter and better than the rest of the world - thus allowing them to make up their own rules. Better minds have already done this. Also, oftentimes colleagues are reluctant to challenge one of their own.
Did you get the full lab report of the exact OB numbers, the serum OB numbers and the IgG Index? (Were there any kappa light chains found? I'm just curious.) I think this is a good idea.
Also, have you had OCT? Optic Coherence Tomography? In the setting of the enlarged optic disc it would be interesting to see the result.
I hate to say it, but I wonder if your medical background raised his arrogance a bit. I'm sure that this happened with me. My earlier neuro was quite comfortable diagnosing somatiform disorder right along with spasticity. He was a peach.
Yes, see someone else. Your doc has already marginalized you and is comfortable not treating you.
Good luck,
Quix, MD
I respect your primary care doc's view of the "whole picture".
JH guy is counting all the trees and giving them all names. Shame on him. Good, tight medical thinking mandates that after looking for appropriate Zebra's you choose a diagnosis that will explain all (or the vast majority) of a patient's complaints, symptoms, physical signs on exam and any positives from diagnostic testing and imaging. So your doc looked at the ataxia and is considering a diagnosis just for that? Shame on him!
Your docs have looked at the regular MS mimics and have ventured into the realm of weird and rare entities and not found anything. So, you have spasticity (in all limbs?), asymmetrical reflexes, urinary and bowel problems, ataxia, asymmetrical weakness, heat intolerance and probably fatigue (yes?). Plus an "enlarged" optic disc.
These are ALL classic and very common problems in MS. If some of the symptoms arrived at separate times then you have MS whether or not the MRI or LP is positive. That is per the McDonald Criteria.
Have you had at least two occasions in which one or more new symptoms showed up and lasted at minimum of 24 hours and then either ever improved or stabilized? Then, at least 30 days after the first symptoms showed up did a new symptom(s) in a different part of the body show up and last at least 24 hours?
If you can say yes to those questions you have MS, even if the MRI is negative (which it obviously is not) and if the LP is negative. Your MRI has provided confirmatory evidence. Ma'am, you are there. The LP would have been done for completeness. It can NEVER, EVER determine that this is not MS. The spinal evidence can provide further confirmation, but a negative one cannot rule it out. I can't even guess what the JH guy is even thinking, unless he will only acknowledge "perfect" presentations of MS so he can reinforce his own lazy thinking, ie. "ALL of my patients have positive MRIs and LPs". This is called a self-fulfilling prophecy or a self-confirmation of his own brilliance. We have seen this before.
In the best interpretation of the role of the LP in diagnosing MS, one can only say that 96% of patients with RRMS have a positive LP (by showing Oligoclonal Bands). Those numbers come from highly standardized studies with extremely well-trained lab techs assessing the presence or absence of O-Bands. As I have said before, not all techs are so skilled. Also, not all tests are perfectly reproducible. Maybe the good tech was out of the office and the stand-in wasn't as good. Lab results are not absolutes. Out in the real world the presence of O-bands is felt to be between 90% and 95%. Not to mention that people with PPMS will have negative LPs as much 40% of the time!
So this guy is willing to miss 1 in 25 people with MS by being more rigid in his use of the LP results than is recommended by the best minds in the field. Wow, I am so impressed. I suspect that he is either arrogant or lazy or both. I wonder who he thinks he is and how comfortable he is with someone having your level of symptomatology.
I am being very generous, when the odds are actually more like 1 in 15 for the LP showing oligoclonal bands.
Would an immunologist be willing to miss 1 in 25(15) of people with HIV?
Would an oncologist be willing to miss 1 in 25(15) cancers?
Would an endocrinologist be willing to miss 1 in 25(15) people with Diabetes?
I think you are in the wrong hands and would strongly recommend that you seek another MS neurologist away from the JH realm of influence. Though it is possible that this guy is just a self-obsessed out-lier and that the other docs will look at your info as they should, I am always suspicious of the institutions like JH who take themselves very seriously and believe that because they are at the "hallowed place" that they are smarter and better than the rest of the world - thus allowing them to make up their own rules. Better minds have already done this. Also, oftentimes colleagues are reluctant to challenge one of their own.
Did you get the full lab report of the exact OB numbers, the serum OB numbers and the IgG Index? (Were there any kappa light chains found? I'm just curious.) I think this is a good idea.
Also, have you had OCT? Optic Coherence Tomography? In the setting of the enlarged optic disc it would be interesting to see the result.
I hate to say it, but I wonder if your medical background raised his arrogance a bit. I'm sure that this happened with me. My earlier neuro was quite comfortable diagnosing somatiform disorder right along with spasticity. He was a peach.
Yes, see someone else. Your doc has already marginalized you and is comfortable not treating you.
Good luck,
Quix, MD
I know how you feel I was diagnosed with chiari and had surgery for it. My doctor keeps brushing me off. He told me it was Parkinson's and 2 Drs told me it wasn't and now I'm wondering if it could be MS.. My employer is telling me I have to get something from my dr saying I can still do my job or I may lose my job.I have been trying to get someone listen to me and I am getting frustrated. I'm tired of feeling like crap. I have tremors on my left side along with weakness and extreme fatigue among other issues. I have been dealing with this for almost 2 years now.
I have some choice words for your darling dufus of a neuro - Johns Hopkins or not. We have seen some really off the wall neuros from there. It is no guarantee of someone who has actually read the MS literature. (Just like the weird stuff we have seen out the Mayo Clinic)
Your symptoms are actually pretty classic for MS and it sounds like an exhaustive and exhausting look for the MS mimics has been done. Your doc is really looking for Zebras now that he has heard the sound of hooves.
It's hard to know where to start with my criticism of what has been told you about whether you have MS. I have to join my family for the evening, but I will get back here later to say what I have to about what it means or doesn't when the MRI burden is light, the LP results are negative, the symptoms are asymmetrical and the neuro is inclined to start giving you a different diagnosis for each symptom.
Sheesh! Are you in the wrong hands!!!
Back soon.
Quix
Your symptoms are actually pretty classic for MS and it sounds like an exhaustive and exhausting look for the MS mimics has been done. Your doc is really looking for Zebras now that he has heard the sound of hooves.
It's hard to know where to start with my criticism of what has been told you about whether you have MS. I have to join my family for the evening, but I will get back here later to say what I have to about what it means or doesn't when the MRI burden is light, the LP results are negative, the symptoms are asymmetrical and the neuro is inclined to start giving you a different diagnosis for each symptom.
Sheesh! Are you in the wrong hands!!!
Back soon.
Quix
I go to Johns Hopkins (JH)7/7 with a reg neuro which was arranged when I was initially diagnosed with neuropathy a year ago by another local neuro. Onset of ataxia and extreme fatigue and diagnosis of myopathy was made after my appointment . I read my post again and I wanted to correct an error in my statement, my current MS specialist is NOT totally convinced that I have MS unless I have a positive LP which I didn't. I just got my results. Thanks again
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