Hi, I am new to this forum and would really like some advice.
I recieved a medical report (that had been lost in the system for 16 months) which was meant for my pain management specialist that I should’ve got after my brain and cervical MRI in May last year that says there are some hemispheric white matter lesions and a left cerabellar peduncle lesion. The distribution raises the possibilty of demylenation and satisfies the McDonald criteria for dissemination in space.
I had absolutely no idea what that meant so googled it and found out that it could mean I have MS. I have spoken to the consultant that I saw for the tests and he has said that I would need another MRI before a diagnosis of MS can be made but I am worried because I had a completely normal results from my MRIs in 2009 and now they are saying I have 10 lesions, temporal lobe lesions and periventricular lesions (medial to the left ventricular trigone) There are firther lesions within the left cerabellar peduncle.
I was hoping that somebody here would be able to help me out and put it in a way that I understand. I have been referred again to neurology for further testing but the waiting is really stressful. I haven’t even been able to talk to a dr about what the results mean for me and been told it could be a month before they can get me an appointment.
I am sorry that you have got this report with no explanation given to you by the experts. There are several boxes people need to tick to get a dx of MS (outlined by the McDonald) criteria. You maybe only tick one of those boxes and they want to do further tests before they can be sure. I dont tick all the boxes either and have been in limbo for over 3 years now and it is so frustrating but there is absolutely nothing you can do but wait.
Further to what Moyna says, I’m guessing you don’t yet satisfy the “dissemination in time” criteria, which is the other prong of a diagnosis. “Dissemination”, in this context, is just another word for “separation”. So you must have lesions both in separate areas of the the CNS (dissemination in space) - which they’re saying you already have - AND separated in time - so not all arising at once, from a single episode.
The scans you’ve had already can only show how many lesions you have at the moment - they can’t prove whether they all got there at once or not. That is why you could not yet be diagnosed without another MRI scan - which, if new lesions showed up, would prove it couldn’t be a single one-off episode - that you’d had lesions pop up at least two different times. Some people NEVER go on to have another episode (new lesions), and thus never have MS (the “multiple” part of the name means it cannot apply to one-off attacks).
Don’t get too hung upon the numbers, because although ten does sound a lot, I was told at diagnosis it’s not unusual to find literally dozens! So ten is not at the extreme end of the spectrum. Besides, numbers alone are a poor indicator of how severely you might be affected. The brain is very versatile, and capable of re-routing, to avoid damaged bits, so it’s possible to have quite a lot of lesions, with little noticeable impairment. More critical than how many is where the lesions are. Just one in a crucial place can wreak more havoc than lots in places the brain has managed to work around.
MS is occasionally discovered accidentally, at post mortem, because the brain did such a good job of compensating for the damage, that MS had never been suspected.
I just wanted to chip in with some moral support. Its horrible finding out of the blue that they are investigating the possibility of MS. Something similar happened to me and for a while, the bottom dropped out of my world. The waiting is horrid, I know, but at least you may be seen in a month. (thats really quite quickly) and once the neuros get their hands on you, they are ususally quite proactive in getting the relevant tests done.
Please try not to worry (I know, easier said than done) and have some big hugs. This forum is a great place to let things out. Please let us know how you get on.
Thank you for all the advice. It’s been a long story starting in 2008 when I started getting pins and needles on one toe, within a month this has spread to both feet then both legs. I also used to get severe burning, redness and swelling in both feet. I was tested for MS in early 2009 and those tests came back clear although by this time I was getting more and more symptoms. I was diagnosed with Erythromelalgia (EM) in 2009 and was told it was secondary, more than likey to a autoimmune disorder affecting my CNS. After a year of EM diagnosis I went into remission that is hardly ever heard of in EM. I came off all medication and my cognitive issues seemed to ease a lot then back in Sept 2010 my EM came back as did chronic widespread pain, severe fatigue that would have me sleeping in my lunch hour at work and getting in bed by 4.30pm until 6.15am the next day. My short term memory became almost non existent, I lost words that I knew but couldn’t seem to find when needing to speak or write and I often say a completely random word in a sentence instead of what I mean. For example Can you shut the wheels (instead of windows) or Do you like the red dress (when clearly it’s green). This can be very embarrassing, I even asked a hair dresser how much he charged for a wash, cut and blow job instead of blow dry… I was mortified.! Things got alot better in April where all my symptoms eased and I started to feel back to my normal self. I had started to hope that things were on the up then about 6 weeks ago I started getting lots of headaches that felt like they were coming up from my neck pain. When at rest I feel like my eyes are moving violently in my head, sometimes it’s so bad I am not sure if it’s my brain shaking, eyes or even my chest because the sensation is so powerful.!
The MRI was taken 16 months ago to try and find out what my EM is secondary to but sadly the results never made it back to the consultant I saw, my pain management specialist or gp even after several letters requesting them. The only reason I maanged to get them was because my neurologist contacted his old secretary in department he used to work in to get then forwarded to him. This wasn’t my local hospital, I had travelled to London for the tests.! My biopsy also showed small fibre neuropathy.