My friends neuro suspects she has benign ms and wants her to have lumbar puncture and another mri with the dye. Could this change his suspicion? What i mean is if he finds active lesions does it mean its not benign afterall? I have rrms so dont really understand benign.
Hi.
I thought benign could only really be diagnosed after years and years living with the disease, yet benign doesn’t mean no problems just limited problems and no great deterioration like loss of mobility. I was under the assumption that after 15-20 years with little progression and still being able to walk, you might then be diagnosed with benign but I might be completely wrong and I’m sure others will be able to give you more info.
Good luck.
BFx
I think I had benign.
I didn’t have RR just one big initial episode that left residual problems but the neuro never really said. I think that you need to exhibit complete recovery for it to be classed as benign so perhaps I had very slow primary or one relapse with a decade of remission. I’m now SP (after 10-12years) so it’s a bit of a moot point
Jane
I just dont get it. First episode was 10 years ago then another 3 years ago but now a much bigger one. There are lesions on her mri but he now wants a lumbar puncture and a further mri. Shes just so confused. He thinks if shes got it its benign. I just dont know what to tell her 
Others have answered well, I get very angry about Benign labels and Mild MS labels. Mine was labelled Benign in 2003 but I was also told to get on with my life and the neuro would not register MS on my records as it would affect my ability to get insurance! WHAT! Plus thre was a 15% chance that it wasn’t MS !!! Well that was after 15 years of on and off symptoms including losing sight in one eye twice. In 2008 after losing my ability to walk for 12 weeks he changes his mind and decides it’s ‘mild MS’. I had to pay privately to get further MRI’s and time with him to discuss the impact this was having on my life. Outcome - it’s RRMS. There is no such thing as Benign, if it was Benign your friend would have symptoms Benign means ‘harmless in the long term’ so does your friends neuro have a Crystal ball, if he has I want to see him too. BTW, I am being monitored for SPMS. Be Well Pat
Oops - forgot to add that the tests can confirm a diagnosis of MS but if the MRI with Dye does not show active lesions and the lumbar puncture is clear it does not rule out MS
Most importantly, the neuro will want to rule out other conditions so, yes, the lumbar puncture & MRI with dye could change the neuro’s suspicion.
Yes, active lesions could mean it’s not benign MS (or is something else entirely). Having both tests means that he’s got a better chance of ruling MS in or out.
The benign label is widely misunderstood, alas. Benign does not mean it’s nice and it does not mean there’s no damage; it means that it is/was MS but nothing’s happening at the moment.
Fingers crossed for your friend.
Lolli xx
Benign m.s. - waht a contradiction of terms.
SPMS - can only be diagnosed retrospectively.
These ‘labels’ are a complete waste of time.
I think I am as confused as your friend!
Has she been previously diagnosed with MS, but told it was “benign”, or has she never been diagnosed with anything? If she’s had at least three episodes in ten years, of which the latest was major, it doesn’t sound that “benign” to me.
If she’s not yet diagnosed with anything, I understand the request for LP, as that’s a common investigative test en route to diagnosis (contrary to the impression often given, NOT essential, though - I’m diagnosed without one).
If she IS already diagnosed, but the only issue is whether it is/isn’t benign, I’m not sure what additional light an LP would cast on that. If she’s having attacks, I would say fairly self-evidently NOT benign, whatever the LP result. I think “benign” only applies if it has caused no problems for ten years or more.
I’m as sceptical as Pat about the “benign” label, anyway.
Bit like classing a volcano as “dormant”. It doesn’t mean it can’t erupt suddenly, even if it hasn’t for years. Not trying to frighten your friend - or you, on her behalf. I just think it’s a fairly meaningless categorization.
Tina
I have been diganosed with benign. My first sympton was ON when I was 18 years old, I am now nearly 45. I lost the sight in my right eye at the time. I then did not experience anything really until a couple of years ago. I was under the impression the benign is when there is a large gap of around 15-20 years between episodes. A MRI will show lesions. If asked I would say that my MS is mild but I do get symptons. But no loss of mobility I am quite active.
Thanks for all the replies. No she’s not been diagnosed with anything in the past when she’s had episodes but the neuro today suspected benign ms. He’s also going to retrieve past gp records to try and piece things together she told me tonight. I was diagnosed with rrms 7 years ago and never had a lumbar puncture. Hopefully she will have more concrete answers soon. It’s just so hard not being able to answer some of her questions, especially with having ms myself.