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?
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?
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.
Thanks very much for this advice Sandra. My neurologist does do research, but not specifically in MS. He is a neuroimmunologist, but seems keen to uncover all neuroimmunological diseases that resemble, but aren't MS. I think a lot of the distinction is academic, since demyelination is demyelination. If you have a lesion load like mine (>25 plaques) you're going to feel pretty bad. Anyway he is adamant that you need OCB's to diagnose MS, and if they're not there, then it's not MS, just something similar that makes you just as sick, but you can't get any help for!! I will do the Google thing and also do my research. I am not in the US but will likely have to go there to get my Dx. Thanks so much, TeddyView Thread
I am in the the unfortunate situation of having a negative LP (repeated 3 times over 5 years), plus a positive MRI satisfying MacDonald criteria and with about 25 plaques. I am 47 years old and I have had symptoms for over 25 years and a bad exacerbation 5 years ago which prompted investigations. I have an abnormal neuro exam. however my neuro won,t diagnose me based on the negative OCB's.
I have had a very thorough investigation for other diseases with a negative result.
I can't work or get a pension or insurance help without a diagnosis.
I desperately need help to find neuro who believes in OCB negative MS. Can you give me an idea of how to find one?
I am in the terrible limbo land of having a negative LP and a positive MRI (satisfying MacDonald criteria), with a lot of plaques. I am very unwell and have an abnormal neuro exam. I have a neuro who won't diagnose me on the basis of my Oligoclonal band negative LP. I know you can't give me your neuros name but I am desperate to see a different neuro ( preferably an MS specialist), who believes that there are these 5-10 %who don't have OCBs.
Is there a register of MS specialists ?
I have been suffering now with no diagnosis, pension or job for over 6 years. Can you give me an idea of how to find one of the "believing " neuros.
Teddy 65View Thread