I’ve been having symptoms for around a year now but still no diagnosis. I’ve had optic neuritis, tingling and numbness in my arms and legs, fatigue and small spasms. I had an mri a few months ago which showed several inflammatory lesions in my brain and some in my spinal cord. Yesterday I had a lumbar puncture which wasn’t very pleasant and I’m really hoping this is that last hurdle before I can get a diagnosis. It seems crazy wishing that someone would just tell me I have ms, but at least then I’d know what I’m fighting. For those of you who have had a diagnosis, do you think I might be nearly there?
Hello
Surely you must be almost there?
In a way, I’m surprised you needed an LP for diagnosis. If you have several demyelinating lesions in different places (ie different parts of the central nervous system), and they can be seen to have occurred at different times (which should be apparent from the MRI), plus have had more than one relapse, MS should be diagnosed regardless of LP.
But, we have to jump through/over the hurdles decreed by our neurologists in order to get answers.
It’s only other people either going through, or who have gone through, this process who truly understand why a formal diagnosis of MS is a positive thing. To us, it’s certainly not a crazy thing.
Hopefully you’ll have a follow up appointment with your neurologist as soon as possible and will find out the results of all the tests, with no more needed for the diagnosis.
Sue
This doesn’t look good for me as I have only had one MRI, blood test plus my lumber puncture, I see the neurologist next week, they have found only one white matter change and no spinal cord MRI. So I don’t know what to do but the neurologist says that if it isn’t MS they will find what it is.
Kay
It’s just as you say, if it’s not MS, then they’ll find out what it is!
I suspect that in your case, the lumbar puncture is quite important. If that is positive for Oligoclonal bands, then that might be enough to diagnose MS. This of course also depends on exactly what the white matter change looks like, your symptom history and physical examination.
The neurologist could refer you for another MRI, maybe of the brain and whole spine, regardless of the LP result.
And of course, if the LP is negative for O bands, that might make the neuro focus on a different diagnosis.
At least it’s just next week. Good luck for that.
Sue
Hi Rosannee
I have had similar tests to you, 2 brain scans 6 months apart, the most recent one showing approx 10 white matter changes and 1 new plaque (don’t really understand this but it was written in bold so must be important). Along with a positive LP. I have been prepared by my MS nurse for a diagnosis and fully expect to receive It on Friday when I see my neuro. It has been a long road about 14 months in total and if im honest it has been the toughest time ever and a diagnosis will be a relief. I can finally move on, I completley understand what you are going through and how you are feeling.
LP results took about 6 weeks
stay strong it sounds like you are nearly there
take care
Mel x