I am hoping Kim can reply to this so I decided to post again. I have LP negative, MRI positive disease. The LP has been negative (3 times over 4 years). The MRI has a lot of plaques satisfying MacDonald criteria for MS.
I have all the typical symptoms, and my course has been slowly progressive over about 25 years with an exacerbation 4 years ago which prompted investigations. Prior to this I had vague symptoms (mostly premenstrually) which are similar to the ones I have all the time now. I never really worried about it. I did not have an RR type course. I had a couple of odd things happen like falling off a treadmill with incredible dizziness after a long run (and getting hot), plus needing to run in ever cooler temperatures.
The MRI has shown 1 new lesion appearing over 3 years since investigations began 4 years ago. There are probably 25 plaques, which means they have been appearing over the past many many years if I am accruing them at the same rate. As a child I had one episode of being unable to swallow, and also random episodes of unexplained fatigue. But I was really well- less than 10 years ago I came second in a major corporate 10 km running race.
Currently I have parasthesiae, genital numbness, sexual dysfunction, a numb right eye and ptosis, numb L big toe, extreme fatigue, headaches, nasal congestion, blurred vision, bladder and bowel problems (relatively recent symptoms), heat and cold sensitivity, muscle pain and stiffness, and I am unable to run because of apparently completely dysfunctional gluteal muscles. I also am unable to work because of vision problems (I have to do surgery), cognitive problems, and fatigue.
The neurology department at the Mayo and most neurologists I have seen will not diagnose MS because of the lack of OCB's on LP.
I had MAJOR investigations for all other diseases including the Mayo's antibody panel for neurological tumours, with negative results. Lupus, sarcoid, Sjogrens all negative.
We plan to head to the US again to go to another major clinic in the hopes of getting a diagnosis, but we don't want the horrible and financially crippling experience of the Mayo again.
I wondered if Kim or anyone knew, of all the major MS centres in the US, who is most likely to believe, that, as Kim said, 5-10% of patients with MS have a negative LP? Cleveland? Johns Hopkins? Buffalo? USC? Brigham?UCSF.
Kim can you give me the reference to where you read that information about the OCB- LP's in 5-10 % of MS patients?
The percentages of negative LPs among patients diagnosed with MS will vary depending on what you read; the article above quotes a source that claims 96% of MS patients have a positive LP, while other sources claim the number of negative LPs is as high as 15%.
The thing is, there is no requirement in the McDonald criteria that an LP MUST be positive for o-bands to make a diagnosis. That is up to the discretion of the neurologist. Sounds as though the Mayo Clinic takes a hard line on LP results.
The bigger issue to my mind is that MS really needs a diagnostic approach that is not so heavily test results oriented. It is still largely a clinical diagnosis, with an array of tests performed to confirm that clinical suspicion of MS. But MRIs and LPs both have their limitations, they are not infallible and cannot reveal everything that is going on in the CNS. A skilled neurologist will know what they are feeling when they perform a neurologic exam, that is, if they take the time and awareness to learn it. Doctors used to practice the art of medicine, but the art has been removed for various reasons.
I for one was diagnosed despite a negative LP. I live in NY and I first went to the top MS specialist at one of the teaching hospitals . He ordered the usual testing and did not make the diagnosis at first,partially due to the negative LP. He ordered a follow up MRI at four months and made a definate dignosis at that time.
He retired about six months later and recomended a doctor at another teaching hospital who upon reading the MRI's confirmed the diagnosis. I have asked about doing another LP a few times over the years but he says it will not tell us anything new.
Policy does not allow us to name doctors but all of the major teaching hospitals in NY run MS centers most of which are very good.
A google search will find you the names of the centers and the doctors who run them and that should give you a starting point if you want to try the NY area.
Thanks very much for the reference Kim. I have seen a few neurologists and each of them have found something different on the neurological exam. Putting all these findings together, there are quite a few "hard" abnormalities on the exam, in fact the ER doctor who first examined me was the best. He found sustained clonus on the left, which I think is fairly significant. Every time I go to a neurologist and mention these findings from other doctors, they don't seem that interested, especially if they haven't found the same.
I will work on finding one who is interested, and as you say, has bothered too learn how to do a careful, thorough and detailed neuro exam. It seems that this is the domain of the newly graduated neurologist or resident, or the nearly retired one, who has had to rely on clinical examination for diagnosis before MRI's came along, and hence has developed the skill.
Hi Rory Thanks very much for this information. That has helped to narrow things down a bit for me and given me somewhere to start. Just out of interest, did the MRI 4 months later show any progression? And if not, what was it that made him diagnose you then?
It's good to know what you are looking for in a specialist, stick to your guns.
Just a little thing to bear in mind: Finding clonus is not necessarily all that significant. Nor is it consistent. True it can indicate a neurological problem--but the thing is, it won't be present in every neurologic exam. Every time I see my neuro, for example, she checks for clonus and doesn't always detect it. She explained to me that it depends on the exam location and the instrument she uses. Sometimes she'll test for clonus more than once during an appt., and it won't present on the first try, but might on the second try using a different location and instrument to evoke it.
What's more, just because clonus isn't there doesn't mean all that much by itself. Continuous jerking can be a result of triggers that are not always there, i.e., infections, raised body temp, et al. And as you've probably heard before, a conclusion is made based on the combination of ALL testing done for MS. The sum is greater than its parts.
Just another way to drive home the point that diagnosing MS is very tricky business.
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