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Shirleymoss posted:
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........
hackwriter responded:
Hi Shirley,

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.

nana2el responded:
Hi Shirley,

I also had a negative LP. My neuro, who is an MS specialist, told me upfront that you can have a negative LP and still have MS. He said the LP is needed to help rule out infections or other diseases.

In addition, my neuro says he sees a lot of signs in his patients clinically that don't show up on MRI. Some are too tiny to see.

I hope this is helpful to you. Take care!

Shirleymoss replied to hackwriter's response:
Thank you Kim , I feel a bit better now , it is just me I think , I probably want to hear that I don't have ms , but I know I do xxx
Shirleymoss replied to nana2el's response:
Thank you Sandra your words helped me
teddy65 replied to nana2el's response:
Hi nana2el,

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. Thanks Teddy 65
teddy65 replied to hackwriter's response:
Hi Kim, 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? Thanks, Teddy
Rory26312 replied to teddy65's response:
Hi teddy

Limbo is really bad you could try or contact your local MS support group, you should be able to find it from the NMSA site (not sure of the link).

You are entitled to a second opinion so if all fails,get a referral to someone else from your PC.

nana2el replied to teddy65's response:
Hi teddy65,

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.

Please let us know how it goes. Good luck!

nana2el replied to nana2el's response:
Teddy, Part of my sentenced got deleted. Sorry. It should say: Look for one that does a lot of MS research and their primary focus is MS. Sandra
teddy65 replied to nana2el's response:
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
teddy65 replied to Rory26312's response:
Hi Rory, thanks so much for your reply. I will try that website. I am not in the US - what is the NMSA?
Thanks Teddy
Rory26312 replied to teddy65's response:
Hi Teddy

NMSA is the National Multiple Sclerosis Assc the other site only rates the US as far as I know. I am pretty sure wherever you are there is a similar organisation.

As Nana said try a google search and see what you find and then search those results to see if you can get ther individual profiles from some of the medical registers.

Sorry not to be of more help

Rory26312 replied to Rory26312's response:
P.S. Teddy we usually find it is better if someone new starts a seperate post so that there is less confusion when making replies


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