Hello everyone, I’m new to the forum and could really do with some advice. I went to the neurologist with a list of symptoms including leg and arm jerking, sudden drops to the floor, chronic exhaustion every afternoon (about 3pm most days!), poor balance, tremor (sometimes whole body and sometimes just right arm), pins and needles right fingers, debilitating stiffness of legs, pain in ankles, shins and knees, tinnitus and a feeling of water in the ear, etc. Neurologist focused on leg jerks and said probably RLS and REM sleep behaviour disorder (because I told him the jerking and arm flailing sometimes woke me up?). I have had MRI results back and I am thinking I may have ms. Some things said were: head - periventicular high signal white matter foci are seen bilaterally at the centrum semiovale in the T2 and DP images, unspecific. MRI spine thoracic - radicular cyst at right neural foramina of C7/T1. Lumbar and sacral - small Tarlov cyst present in sacral canal at the level of the S1. There’s more, such as protrusions which may compromise L4/5, and spondylotic changes with disc-osteophytic bar complex (cervical) but these are separate I think? I am not due to see the neurologist until December so would welcome any advice as these are scary times Thanks for reading to the end!!!
Have you spoken to neuro to discuss the results. If not ask your GP to write to neuro to see if MRI will change your DX. From my opinion they are very slow at getting things done.
Hi there Same as Moyna speak to your GP , and unfortunately things are slow but sometimes the gaps inbetween appointments are to see if there have been any changes in symptoms. Why you have been sent a letter with so much jargon is beyond me it’s bound to put further stress on you, which you don’t need! My GP wrote to neuro mainly as work were pressing for answers and my neuro wrote to me in a brief to the point ‘nice’ letter of explaination of the next steps in the process. He didn’t go into detail about the MRI (thank goodness). I would stick to your GP/Neuros knowledge rather than trying to make sense of it all by yourself or asking on the forum for someone to try explain what it means x lotsa love Michelle x
Thanks Moyna and Michelle. Its the time between appointments with no answers in between that bothers me most, but I am certainly not alone. Like you, Michelle, my work clearly needs to know what’s happening and it’s difficult not being able to give answers! The MRI report went to my (newly qualified) doctor who printed it off for me and told me to look up the terms!
Philosophical from now on…
I’m not going to attempt to translate the whole thing, because (a) I’m no expert, and (b) I’m too lazy - sorry - or possibly too fatigued, having MS myself.
However, there appear to be several mentions of cysts. Cysts have nothing to do with MS, and are quite distinct from lesions - but could also be causing symptoms.
You do also have mention of two lesions, however, these are described as: “unspecific”, which means they were not typical of any particular disease or condition, including MS. MS lesions, to an expert, are usually quite distinctive, and I feel that if the lesions were of a type strongly suggestive of MS, there would be at least some mention of it in the report. For example, “demyelinating” is an adjective that crops up frequently if the lesions looked MS-ish. They haven’t said that anywhere.
There is a sticky post by Rizzo which shows at the top of the forum called a beginner’s Guide to The Brain (or similar). Might be worth a read as explains MRI and brain in layman’s terms.
Hope this helps
Thanks Tina and PG. I did read Rizzo’s excellent and thorough sticky note before posting.
I didn’t type in the whole sentence regarding the foci, it continues after unspecific to say "and may represent small vessel disease/microangiopathy or demyelination.
Thanks again for taking the time to respon, guys x