I've been following this forum for a while. This is my story so far: Diagnosed 2012, never told what type MS. Had severe fatigue, numbness and tingling in arms and legs, MS hug, Lhermitte's sign & weight loss (that was nice😊). MRI showed cervical and thoracic lesions, positive LP & failed VERS test. Neuro sent me to MS specialist for confirmation as he never had a patient without brain lesions. She said I had Spinal MS. Neuro started me on Copaxone. Felt progressively better 2013 & had no new lesions or obvious relapses. 2014 - 1 brain lesions, 2015 - another brain lesion. All the while, for 2 yrs Neuro not concerned. I did have PT after complaining of hip and leg pain/stiffness & generally"felt like crap". Found out I had labral hip tears and gluteal tear from falls. I tend to fall up stairs and trip over nothing. Lol. Also started seeing Chiropractor and again slowly started feeling better. Of course, by 2016 had put the 50 pounds I had lost back on which was a big bummer! Then late 2016, for 2 months I had what I term whole body, central vibrations that never went away, constantly aware unless asleep and sleep was and has been an issue. Yes, I tend to wait a while before I see a doctor. But this was literally driving me crazy! I went to Neuro and asked for something for anxiety. He said he could refer me to a psychiatrist, then added that "in ten yrs they'll probably figure out that what you have isn't even MS, but something else." My husband was present for this visit and said, " you need to see someone else." So, back to MS specialist 1 1/2 - 2 hrs away, but worth it, who immediately said I should have been put on a stronger DMT to start with since my lesions were initially all spinal. 2016 MRI showed now 3-5 brain lesions. Had hysterectomy in Dec 2016. Once cleared by GYN, started Gilenya Jan 31. Unfortunately, my liver does not like this medication and had to stop it last week after my levels continued to rise after decreasing med to every other day. Neuro is out on medical leave and will be seeing NP tomorrow. Other than monitoring labs, not sure what the next step will be. My big concern is what DMT they will want to try. Seems like almost all of them have potential for liver enzyme elevation. Sorry for the long post. Has anyone else had med issues?
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