HI I will cut a long story short, as I am interested to see if anyone else has had a similar experience. I have been suffering with numerous back problems for about 5 years, in January 2015 my physio told me t go to a&e because of bladder problems. I was kept in and an mri was done first thing the next morning with a view to operate. when the neurosurgeon came to see me, he said although I did have numerous spinal problems they weren’t to blame for some of my problems, i.e increased muscle tone, hypersensitive reflexes and spasms along with the bladder problem. He asked to see me as an outpatient, at which time he explained, that he suspected brain disease to be at blame and referred me to a neurologist. After reading my notes examination etc I asked him what he thought was wrong with me, and told him i suspected MS. He confirmed my suspicion, and went to explain that he thought I have primary MS, and why. He the ordered an mri, which had on 25 Sept. I haven’t seen the neurologist since then, but my GP said the report said my mri was normal. I am confused now as everything pointed to ms and of course the worry because of not knowing has started again. I hope I have given enough information without boring you all.
p.s this is my first post and am so glad you are all here for each other. I hope some out there can give me and maybe others in my situation some insight.
Your situation is not that uncommon. MRI evidence carries a lot more weight than just symptoms, so generally it will not be possible to get a diagnosis (at least, not one of MS) with a normal MRI.
Whilst it is possible for damage not to show up early in the disease, this gets less likely the longer symptoms persist. In other words, it can’t stay invisible forever - I’d expect someone who has had symptoms going back five years almost certainly to have something showing by now.
I’m no doctor, much less a neurologist, so I don’t know how long is the absolute maximum anyone could have symptoms without abnormalities becoming visible on MRI. I would think five years was probably pushing it, though
So a positive explanation would be that you simply don’t have MS - the suspicion was wrong! But I realise that is still frustrating, because it leaves you no wiser about whatever it is you do have.
I would try to take comfort from the fact a clear MRI is NEVER a bad thing - it means there is still room for optimism MS isn’t the problem.
I appreciate it deepens the mystery about what is, though. Unfortunately, there is sometimes no clear answer to these things, and it is a matter of watching and waiting, until there is stronger evidence (of anything - not just MS).
I’m sorry this probably doesn’t help much. Just try to remember a clear MRI is good.
Oh, P.S. - I forgot - I don’t think you needed to mark your post “Not MS”, as that is usually used for things that are completely off-topic, like: “A funny thing happened when I went to the shops this morning!”
Your post is clearly about MS and the diagnostic process, even though you haven’t been diagnosed with it, so please don’t feel you have to select: “Not MS” every time. Being undiagnosed doesn’t mean your post isn’t about it.
Thank you for your reply, I miss led you in my post, the symptoms similar to MS only started about a year ago, but the bladder problem was suspected to be down to my back. It was then that the neurosurgeon noticed increased muscle tone and hypersensitive reflexes and suspected brain disease. Hope this makes it more clear.
Hmmm. Having a clear MRI at any stage does make MS less likely, but a year with nothing to see is obviously not quite as extraordinary as five years with nothing to see.
Unfortunately, there is no test that proves categorically you do or don’t have MS - only evidence that makes it more or less likely. A clear MRI is in the “less likely” category - and every clear MRI you subsequently have (if you have more than one) makes it a little bit less likely still.
And sorry I ever said anything about the “Not MS” tag. I didn’t mean you should have to do it all again. It was just a tip for the future - that you needn’t announce it as “Not MS” all the time, because your posts very clearly are about MS.
If you ever wanted to talk about sports results or something, which is fine too, as we’re not an “MS only” forum, “Not MS” would be appropriate, as it gives people a heads-up it’s not connected.
It only really matters if people are searching for things by category.
Hi - I’m exactly the same four years and two MRIs have come back clear!
First was done when I was refered about migraines and neurologist noticed that my eyes were not tracking properly - checked for some type of epilepsy and did an MRI all was fine . my optician noticed the problem with my eyes at next appt without me saying anything - wanted me to see someone again . i said that all was fine . left it two years . meanwhile I experienced some other unusual symptoms
Tingling in left forearm to fingers - feels like i’m wearing a glove sometimes - reduced power in the hand - ongoing although it did go away for about 12 months
often get problems understanding speech when I enter a room - can’t understand the TV when I turn it on - don’t follow the thread of a phone call . totally weird and it freaks me out . Lasts about 2 mins during which time I don’t know what to say and if I try to speak I think my voice sounds weird and speech is very slow . This happens about once every two weeks
Eventually my optician wanted me to see an opthalmologist as I needed x10 prism lenses in glasses to stop double vision close up. the opthalmologist diagnosed sixth nerve palsy - but there was no reason for its occurance
Talking to my GP she was concerned enough to send me to another neurologist att he same hospital as the opthalmologist and they did another MRI - it came back clear
without a diagnosis the neuro put it down to carpel tunnel in my arm - Idon’t think it is though .
Symptoms still persist though eyes are moving better now. Still no diagnosis
New to this forum but not to the possibility of MS. Since I am (now) very high functioning with few consistent symptoms I stopped seeking a diagnosis. Like others have mentioned - I am now in the Fibromyalgia category. I am not a big fan of western medicine approaches to my vague symptoms and have found great relief and comfort in alternative forms of health and healing, especially acupuncture and a clean diet.
10-15 years ago I was virtually disabled by fatigue and pain. Now most people wouldn’t know I had that experience at all. I am obsessively careful not to overdo it and I watch my diet closely (wheat/gluten free, vegetarian, no sugar, organic, lots of whole and raw foods). This approach has allowed me to live a relatively normal life but there are a couple things bothering me and I am seeking some feedback from the group to help me understand what I might be experiencing.
I have chronic Epstien Barr syndrome wherein too much physical or emotional stress will trigger exacerbation of fatigue and flu like symptoms. The impact following the acute exacerbation can last a couple days to a couple months (pain, fatigue, etc). The main issue I deal with on a monthly basis are an increase in some vague symptoms just before my period. Hx of optical migraines, now just regular migraines, sometimes flashes of light in left eye, and rapid side to eye movements when trying to read (intermittent). Brain MRI is clear. Insurance did not approve a spinal MRI. Hx of very high vitamin B12 serum tests. Have previously tested positive for ANA titer, but since changing my diet that is no longer postive.
Before my periods my hearing starts acting funny, echoing, in an out, too loud or too soft. Balance seems slightly off kilter, left arm feels weakened in strength. Strength testing does not reveal actual weakness, but I drop things, have a hard time with fine motor (buttons, etc), and problems opening jars/bottles. Legs can sometimes feel heavy. Depression can increase, anxiety can increase to the point of near panic attacks. My left leg will sometimes buzz, vision can become a bit out of focus as well. Nothing major with these symptoms. I still go to work - though I try to rest more in these times.
Is it possible to have such mild MS that symptoms are almost nonexistent…but then to have them flare up because of hormonal changes? Any feedback is welcomed. Thank you. Lisa
I am the same, I lost the colour green perception in one eye and my optic nerve was damaged two years ago. I now have what I can describe as electricity moving across my face and tingling in my feet and toes but the MRI’s have been clear. I attended a Neurologist yesterday and he said it could be migraines showing up in my face ?? And that he would not give me any dangerous treatments until it floors me ?? He relieved My of €120 for the pleasure too.