Dissemination in space

New diagnosis and before diagnosis
1

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.

Thanks

2

Hi Laura, sorry to hear what a worrying time you are having. Like you I didn’t understand the technical terms used in my MRI scan results. Have you looked at the “Beginners guide to the brain and MRI” post on this forum? It may help. Also I read somewhere that the number of lesions DOESN’T correlate with severity of disease. So try not read too much into going from a normal scan to having 10 lesions in 4 years. I avoid trying to interpret results myself now as it just makes me panic more. Take Care. RedShoes xx

3

Thanks Red Shoes :slight_smile:

Firstly it seems my post has been added twice and didn’t get notification to tell me I had a reply, sorry.!

I have been having symptoms that ‘look’ like MS for a number of years on and off but had been told it was ruled out on 2009. I was only given another MRI last year to try and find out what my Erythromelalgia was secondary to so getting this letter was a huge shock even. My gp, physio, pain managment specialist, biomechanic, bladder nurse and Neuro hadn’t seemed to put all my symptoms together. Lets hope with the new referral to see a local neurologist things will get sorted. I had to travel to London for my last lot of tests but have said I want to be treated locally to ensure results get fed back to everybody concerned this time. My last MRI results never made it back to my neuro, gp or pain specialist.!