I’ve been wandering the diagnosis pathway since January this year. In fact on reflection I’ve been wandering this pathway for many years now. Anyway. I have been fortunate that by default rather than design to have had an MRI, Evoked Potentials and a Lumbar Puncture. The MRI showed two small abonormalities that I understand are common with no clear diagnostic significance. Feint oligoclonal banding was found in the spinal fluid but it was not typical of that found in people with MS. Evoked potentials showed delayed conduction in right eye, left arm and both legs. I have received a letter to say I do not have an active neurological condition because the neuro filaments in the spinal tap were very low. Does that mean I do not have MS? What exactly constitutes an active neurological disease? Is it the same or different to an active neurological disorder? I’m completely baffled.
I have had to have the evoked potentials repeated as they are not in keeping with the MRI and lumbar puncture results. I am waiting again for results.
I’m feeling so conflicted as I don’t really understand what the letters are telling me. It seems to be all about what it is not, rather than what is causing my issues. I was diagnosed with Trigeminal Neuralgia some years ago btw.
Is this toing and froing the usual way of things and can anyone tell me what I can take from the information I have been given above please?
In the meantime I remain exhausted, in pain and unable to live what I would consider a normal life for someone of my age. Thank you!
I’m sorry you feel so bad. I have also found some of the past medical reports difficult to understand.
As you have not been diagnosed with one or the other, I would suggest speaking with your GP. He/she should be able to “translate” the reports and maybe nudge the relevant neurology department to find out what illness you are dealing with and start some treatment / illness management techniques, whatever is there.
When it comes to MS, the disease affects everyone differently though we will share the symptoms but what all neurological illnesses have in common is that stress makes, whatever we are dealing with, much worse.
Hope you have some luck / a bit of possitive outcome with your GP.
Best wishes
Unfortunately neurological issues can be very difficult to diagnose, which can lead to great frustration. To get a diagnosis, your symptoms and test results have to match a pattern. Great as MRI scans, lumbar punctures etc are, they only offer a very small insight into what is actually happening in the brain and central nervous system - much of what is going on won’t be picked up by them.
RRMS is perhaps one of the easier ones to diagnose, as it has typical features that are often big enough to be seen on a good quality MRI scan, and active inflammation will show up on MRIs with contrast stain, though that has to be done very soon after a relapse to show. But even RRMS can take years to diagnose. PPMS is harder to diagnose - more activity is in the spine rather than the brain, and lesions in the spine are much harder to see on MRI scans than those in the brain. Also there is much less active inflammation so less to be seen on an MRI scan. The so-called ‘smouldering’ degeneration.
About 10% of people with neurological conditions never get a name (diagnosis) for their condition. They may have clinical features that are genuinely neurological, but the pattern doesn’t fit a recognised syndrome.
From the information you give above, your evoked potentials suggest that something neurological has gone on. Good that they are repeating them, to eliminate machine error etc. Neurofilaments tend to be elevated if there is recent neurodegeneration, so a good sign that they are low. It looks as if you may join the group of ‘in limbo’ people though - not enough features to reach a diagnosis. This to-ing and fro-ing is unfortunately all too common with neurological issues.
I don’t think there is any real difference between active neurological disease or active neurological disorder. They are more likely to use the word disease when that disorder has a particular pattern and hence a name! Syndrome is another of those words - has a pattern, and therefore a name, but they are not clear what causes it!
This forum is a good place for those in limboland. I’m one of those in limboland. My current neurologist has told me that what I’ve got may be rare and hence will have no name, and may never get one. The previous neurologist also thought there was something rare going on. At least they are consistent, even though of no useful help!