I’m a bit confused!!! I was dx with PPMS back in February. No real surprise there, I hadn’t been feeling “right” for a while. I did have several lesions on my brain and one (apparently) at the top of my spine (although I’ll be buggered if I could make it out on the MRI!!!) The neuro who diagnosed me said at the time, "I’ll just send you for a VEP test. To dot the "i"s and cross the "t"s on the dx. Off I went or St George’s and had the test done. I heard nothing back. I had to chase my neuro’s secretary for the results. All she finally sent me was the report from the Neurophysiologist, which said, “Well formed potentials obtained from both eyes with normal P100 wave latencies. Normal visual evoked potentials bilaterally”. If my neuro sent me for this test just to confirm diagnosis, why have the results come back normal? I am very confused by this. Can anyone shed some light? Have a pleasant evening all. Al
TO St George’s. Bleeding’ predictive test!!!
Hi, I have an RRMS diagnosis, not PPMS, but I hope you don’t mind me answering anyway? VEPs are used in the diagnosis of RRMS too, and I am still diagnosed, even though they came back normal. As you probably already know, there is no single test that can either prove or disprove MS, so they look at the totality of evidence. Abnormal VEP results would have helped confirm your Dx, but normal ones can’t rule it out. The short answer is MS is hugely variable, and nobody gets everything. Coming back normal/negative on one test can’t prove you don’t have it, unfortunately. Tina
Hi, I’ve never had a VEP test… and I’m dx with PPMS (via MRI and LP).
I don’t think if you’ve been dx via MRI that a normal VEP will change your dx.
Anyway, if there’s any doubt you could always have LP (which for vast majority of people… inc me… is not too bad an experience).
Don’t want a LP. I’ve heard they’re agonising!!!
I’m diagnosed without a LP, and with thr normal VEPs as well. MRI evidence was pretty compelling (lesions in brain & spine). That and the symptom history were enough.
If it looks like a duck, quacks like a duck…etc. etc.
Of course, it’s not quite as straightforward as that, but nothing else came back abnormal, so MS is what we were left with!
I’m definitely in the “quack quack” category!!! The neuro’s dialogue just seems strange. I’ve probably had the most straightforward dx ever, compared to the uncertainty some people have to go through. 1 appt with the neuro when we went through my symptoms history and 1 MRI. Al
I love (filtered word) it speaks volumes! Only thing I’d say about LP - I was told I had to have one, I was very naive in 2007. It was ok but thumping headache after, they should make sure that you lie flat and still. Welcome to the quacky world of PPMS, Take care, have a good week M
Hi, I can understand were you are coming from. It sounds that the nuero was not 100% sure of the if he wanted a VEP to help him confirm MS. What is the point of doing a test if when negative it is not going to change the dx. I am not dx yet but my walking is progressively getting worse due to spasticity. PPMS feels more likely to me as opposed to RRMS. But uncharacteristic for PPMS is that I had one attack which I recovered from well in 2008 and then in 2009 I started to notice spasticity which has got worse. Also I have a clear LP which is uncharacteristic for PPMS too. I have only one spinal lesion and a clear brain scan.
I had an LP, wasnt as bad as i thought. The worst thing was waiting for the pain… but there wasnt any. Either they are all hypped up to be painful, or the nuse who gave me one had a very steady hand.
Hi, I was dx’d with MS with PPMS with VEPs, an LP and a CT scan (which was inconclusive) but no MRI. Had a thorough clinical exam too! Teresa xx
Had 3 LPs, plus spine and brain scan. I never got shown any results, was just told Im PPMS. I asked Neuro last time I saw him and he said from his notes 4 lesions on spine and minimum number on brain? WTF? 3 LPs because fluid taken was negative each time. Proper confused about dx tho.
Hi Stevie, just curious at why you’re confused by dx?
I would think that the lesions on spine and minimum number on brain, along with your symptoms, can be nothing but MS (process of elimination - in that they decided it couldn’t be anything else). And with no relapses but steady progression they have dx PPMS.
Also, spinal lesions generally appear more with PPMS. Although not always the case… I was dx with brain lesions and with marks on spine that might be lesions but might be ‘wear and tear’ … though I did have positive LP.
Hope that’s helped. If not, post about what’s confusing you. Between us we might be able to sort it out.
Hi I’ve recently been dx with PPMS. I’ve got spinal cord damage so physical symptoms couldn’t be relied on. My neurologist was fantastic, he wanted all the tests done. My brain MRI has lesions but my neck was unreliable as my screws make it hard to read, but my CEO was normal and he explained that it only treated tested for optic neuritis and not every one with MS has it so he was able to confirm a definite diagnosis with my LP which was positive and the brain lesions. The LP itself wasn’t bad buff add my spine is awful it took many attempts and I still have pain where they did it now about a month afterwards.
You just have to decide whether or not it’s worth the discomfort to get a diagnosis.
I’m already diagnosed. I don’t doubt the diagnosis, I’m just confused about my Neuro wanting me to have a VEP to “dot the i’s and cross the t’s”, yet when it came back normal he didn’t seem concerned. Why bother sending me then? Thanks for responding. Al
I hope you guys don’t mind me juming in here but I found this an interesting read.
I saw my neuro for the 2nd time today, he said it “appears likely” that I have PPMS and that only time would tell… It seemed quite logical to me, he wants to see me again in 12 months, he’s getting me hooked uo with an MS Nurse and an MS Physio in the meanime. He was right in what he predicted at our first meeting, in that my head MRI showed lesions, my spinal MRI had white dashes all over it! He said it was still possible it might be RRMS but given that I ended up referred to him following a chain of events after a fall, not me going to the doctor with concerns…it kind of crept up on me, funnily enough the neuro even echoed my own thoughts on that one today.
My neuro was really good in showing me my MRIs and explaining them, (my husband now knows that I really can’t help snoring, my sinuses are a mess! Just wiggly lines really.) what lesions were in what part of my head and why my balance is so effected. I clarified it was definitely MS, he said undoubtably now but he couldn’t say with certainty which type. I was relieved no more tests and I told him I was terrified he might suggest the LP, he just shook his head on that one - phew!
I had some minor improvements from taking the mega-dose of steroids but most of my symptoms remain unchanged really.
Hi again Sonia, well it is a shock to hear it might be PPMS and the wait-and-see is pretty typical.
Just a few things that might help you deal with this… contrary to popular opinion (LOL… love that phrase!) PPMS is not the ‘worst’ MS. Like all the types of MS it is different for everyone.
Lots of us with PPMS progress slowly, and it can even stop progressing or ‘plateau’ as it’s called.
We have one user on here who was dx over 40 years ago (before there were even ‘types’ of MS but his is PPMS) and he’s still living independently and doing his own thing.
Also right now there is huge amount of research going on worldwide to find new treatments for PPMS… so treatments to slow progression or even stop it are on the horizon.
For now, try and get to know your own unique MS. You’ll soon learn what makes your symptoms worse (for most of us it’s stress, heat and overdoing it!). Rest a lot. Take it one day at a time.
The advice is often to ‘pace’ yourself to save your energy… but I don’t think I’m the only one who finds that to be pretty useless. If I’m feeling good I go with it and know that it might mean a day or two in bed… but would rather ‘make hay while the sun shines’ and the put up with the pay-back.
This is a great little group for support, advice and friendship. And we are a little group… only around 10% of MSers have PPMS… so quite an elite little group!
Take care and come here and ask us anything… absolutely anything… nothing is taboo!!!
Looking forward to getting to know you,
Thanks Pat, that means a lot and is some good advice.
I said to my husband that it did seem to be more predictable in a way, at least I wouldn’t have relapses that blotted out sections of my life with symptoms that I hadn’t expected etc.
The more I read, the more confused I get!!! I was given a PPMS dx after 1 MRI. There were definite lesions on my brain, but only 1 on my spinal cord (which I couldn’t make out on the picture). Yes, I feel like my walking has worsened progressively, but I’ve had bouts of numbness over the years. Am I lucky the neuro was so decisive? I read some awful stories about people being left in limbo for years. I had an initial referral, an MRI, then a dx. Simple!!! But the VEP coming back normal really confuses me. As I have said before, I was told it was to dot the i’s and cross the t’s. But it came back normal. Confused!!! Al