Newly diagnosed and confused
I went in for headaches and it turned into something more. I’ve been diagnosed with MS, showing lesions in my brain and a new one a little over a month later as well as some evidence in my thoracic spine, specifically at T9 along with Oligoclonal bands in my CSF. They believe they’ve caught it early as I’m not showing severe symptoms. I’ve yet to speak with the neurologist, only having spoken with PA’s. I left the follow up with more questions than answers, my questions during the visit were not answered fully and I was told to pick a treatment by next week with little to no direction - just handed a handful of papers stapled together describing my choices. I’ve requested a referral to see the specialist. I’ve also got an indentation into my spinal thecal sac between C5-C6 and lumbar spine is also shifted. I know no one is a doctor, I’m just looking to see if anyone has had a similar experience. I’ve been driving myself crazy looking up symptoms and could it possibly be something else. I believe I hand peripheral neuropathy. Maybe it’s a combination.
Hi @KristineK, My diagnosis was incidental too - they were looking for something completely different and I got the 'good news / bad news' call. I think your C5-C6 stuff is postural. Do you have a job where you sit a lot? Read in bed with a pillow holding your head higher than when you sleep? I wouldn't be surprised if that's the primary cause of your headaches. A chiropractor can help. I think asking you to pick a DMT without having your MS staged is irresponsible. It's like picking an antibiotic without knowing what kind of infection you have. That said, Ocrevus is the only DMT that I know of that is indicated for both progressive and relapsing/remitting MS, so you can start there and change after your MS is staged. The weirdest thing for me after I was diagnosed was realizing that there weren't any answers forthcoming because no answers existed. For something as big and scary as MS you might expect a voluminous cache of knowledge, but there really isn't anything aside from the basics. There are some common symptoms, but you may or may not experience them. I could write you out my laundry list of symptoms, but yours will be different. I think you touch on a key problem with MS - that subconscious bias that we, and clinicians have, to blame everything going forward on MS. Like I said, I would guess your C5-C6 stuff is postural, and it's going to cause you discomfort, but I doubt it's related to your MS. I hope you decide to hang around here. Shift.ms is a great place to normalize all of the weird emotional and physical stuff you'll be experiencing. Welcome aboard, Kristine. Glad to have you here but sorry for the reason :-)
@NeedMoreSleep thank you! Yes, I have started seeing a chiropractor and was advised by my osteopath to quit seeing them because of my disk issue. Needless to say, I’ve stopped seeing that osteopath who only wanted to give me a lift in my shoe rather than look at any muscular issues/tightness that is causing my right hip to be a bit higher. I’ve also been seeing a certified Rolfer and have experienced more relief with her as well. My next step is to practice yoga for stress reduction & to strengthen my body. Some days that’s difficult. One day at a time. :) I appreciate your words of advice and hope to continue to build a community of support here as well.