Hi I have been diagnosed with ms now for 2 years , I have all the usual ms symptoms , my mobility is v.poor , I had lp when I was being diagnosed and it was negative , I have positive MRI s I have had multiple admissions to hospital as I lose control of my legs and end up losing control of bladder , also I can't take oral steroids , but my MRI don't show up any new lesions in brain or neck , my neuro suspects my back getting attacked , but I had another lp done in may , 2 yrs since my last negative one , and this one also came back negative , my ms nurse said this is unusual , and calls me their unusual patient , I don't understand why I keep getting negative lp when I so clearly have ms ? HELP........
Though it is unusual to have a negative LP, it isn't unheard of. About 5-10% of MS patients have a negative LP. Doctors diagnose MS based on the combined results of tests that rule out other diseases, on MRIs, EPTs, neurological exams, LPs, and symptom history.
An LP is performed to find the presence of inflammation in the Central Nervous System in the form of oligoclonal bands. It isn't known why some of us have no evidence of this in the spinal fluid.
A positive MRI carries more weight in an MS diagnosis, however, as well as your physical symptoms. An MS diagnosis is still very much a "clinical" one, meaning a doctor will run tests based on the physical symptoms a patient presents. It also isn't unusual to have an unchanged MRI despite having MS attacks.
Sounds like your doc and MS nurse are on the ball. I hope they are helping you with symptom medications and a disease-modifying drug you can tolerate.
Hope this helps. Do feel free to post here any time with your thoughts and concerns.
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.
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 sorry you are going through this. It can indeed be very frustrating.
Unfortunately, I am not aware of a register of MS specialists. I found mine by doing a Google search. I just simply searched for "MS specialists" in my state(Tennessee). Then I did research on the ones I found. Be aware though, not all of the specialists are equal. I ran into one at a prominent university center who didn't help me at all.
I hope you can find a doc close to your home. Look for one who does a l
Kim gives great advice. She may know of a resource that will have some info. Hopefully she will reply as well with her insight on this.
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, Teddy
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