I’m posting this again because last time it didn’t show up. Apologies if it shows up twice! Not sure what I’m doing wrong!
MRIs in PPMS
Hi everyone. I’m new here. I’ve been reading a lot as you have a nice PPMS community over here. I’m actually from the US, so I hope you don’t mind me jumping in here.
I’m currently still in limbo, trying to figure out if this is or isn’t MS. So far my neuro is great and really wants to get to the bottom of things, but not an MS specialist. I’m 31, female, mom of 3 kids.
My question is about lesions in MRIs in PPMS. Everything points to PPMS for me, I’ve had no relapses, just a slow gradual progression of symptoms. Mostly in my legs and eyes, although my arms and cognitive functions are affected, too. At my last appointment my exam showed babinksi reflex on the right (no reaction on left), hyper reflexes in both knees, ankle clonus on both sides, spasticity and weakness. Also have an abnormal eye exam but need to see the neuro-opthalmologist to figure out what it means. Eyes aren’t working together well at all. Tremors in left arm (although I’m wondering and going to ask neuro if it’s actually clonus, it feels just like the clonus in my legs). EXTREME fatigue, heat intolerance, double vision, etc, etc. Obviously something neurological going on.
So I have had MRIs with and w/out contrast of my brain and spine and I have no lesions at all. Nothing. Some minor degeneration in my spine, but nothing that is interfering with my spinal cord, just some basic wear and tear that everyone gets. Other than that MRIs look great. Neuro said in my letter with results that there is nothing to explain my symptoms. I go back to see him in 3 weeks.
So, is this typical of PPMS??? Is there a chance that it is still MS even without any lesions? All my clinic signs seem to point to it, and most everything else has been ruled out. VItamin d is good b12 is good, no antibodies for lupus or any other things they have tested for. I take magnesium, vit d, calcium, coq10, and a daily vitamin, and still have the spasticity that gets so bad I take muscle relaxers at night so I can get some sleep. I would say that it’s been probably at least 2 years since things have been going on. Maybe more, but things started so subtley I was able to brush it off for quite a while. Now I am having trouble walking, can’t take a hot shower without turning into some mixture of jello and lead!! And am sooooo tired I’m having a hard time keeping up with my kids.
Also had a grandmother with RRMS, a second cousin on the same side with PPMS (both have passed), and now a son of a second cousin has been diagnosed with MS, not sure which kind, although from what I hear he was ignoring things way too long and is now pretty bad off.
ANyone have any insight? Did you have clear lesions when you found out it was MS? Is it possible they just can’t be seen yet? Or are looking in the wrong direction? Next step I believe is the lumbar puncture, but will find out more when i see neuro later this month