First, I want to tell you all (currently strangers) how helpful your posts have been. I've been reviewing them since I first started experiencing symptoms and I cannot tell you how much the information you provided helped. That you all take your time to answer questions and share your knowledge is amazing. You'll never know how much it helps people like me, who are in limbo and scared.
I said I wouldn't join this forum, but I broke down. And I'm looking for any experts that may be able to give an opinion. I saw a general neurologist who ordered tests (more about that) and an older, well credentialed MS neurologist who is on the brink of retiring. Both told me that I may have MS, but they aren't sure. In the MS doctor's words: "I don't think its MS, but it very well could be the beginning of it." As father of two very young children, I'm scared, and that doesn't help!
So, I'm asking for your help. I'm not necessarily looking for you to diagnose me (although that would be nice if had some ideas on what might be going on), but I am hopeful that I can get some understanding of what my test results mean, what I should be pushing for in terms of other tests, etc. I'm asking a lot, I know, but if there is someone with information that would help and could share, it would mean the world to me and my family.
My story: it starts with twitching eye on my right side. Not the typical twitch, but instead, wobbly vision as a result. 2 weeks later, numbness in my left side of face, left middle arm and lower left leg started abruptly in Nov. 2014, after I worked out. A week or two goes by and not much changes. My PCP runs a lot of tests (to rule out stroke, etc.). CT Scan, heart, etc. He also does a MRI of my head (1.5). It comes back normal. Then I see neuro. He recognizes that the MRI was a 1.5 and not a 3T, and reorders the MRI on a 3T.
The 3T shows T2 hyperintensities (none bigger than 3 mm, about 11 in number) in the deep subcortical & periventricular white matter of both the cerebral hemispheres. No enhancement.
Following the MRI (about 2 weeks after the mild numbness), I feel like a train hits me. It started with a mild neckach, then headaches that start on one side and then to whole head, twitching vision on both sides, the most stiff neck I've ever had. Deep fatigue. Emotional, anxious. Extreme weakness in the areas that were previously numb (on left side). If I do anything, it feels like I've lifted weights to exhaustion. Trouble swallowing, choked on food. My lymph nodes on the left side of my neck started swelling (and have been to this day). Twitching muscles on both sides of my body. Hard time saying my words; confusion at work. I also get a red rash around both eyes, that comes for 3-4 days, then goes. After 2 weeks, those very bad symptoms go away.
During the "bad period", I had a LP. It came back normal on all tests (bands, protiens, etc.). I was also tested for inflammatory diseases (lupus, etc.), and those came back normal. I was also tested (at the LP and otherwise) for lyme (because I had a deer tick in my skin in April 2014), but those came back normal (I pushed that far - i had the normal blood test, western blot and even a PCR of my LP). I also had evoked potentials, and those came back normal too. I had an abnormal Babinski (left foot), but no other neurological deficits.
Now, I'm left with buzzing in my left foot, tiredness in my left arm if I over exert, numbness in my face on an off (left side only), twitching in both eyes, lymph nodes still swollen, and a feeling of incoordination in my left foot and leg. I also think I have mild cognitive issues (can't find words). My left arm gets a bit more tired when I take a hot shower, but not dramatically. The eye rash comes back when the symptoms show up, but then goes away. I have periodic burning feelings in my left arm, periodic feeling of being wet. Recently, started buzzing in right foot, too.
I'm sorry - that was a novel. The doctors are going to do another MRI in 6 months, and otherwise, wait it out. I'm anxious. If its MS, I want to be on the drugs to stop progression. I also want to know if it is a mimic, and what other testing I should do. Except for this, I am a very health person that (previously) worked out a lot and ate well. My only health issue is celiac disease, which I manage with a gluten free diet.
Any help or insight you can add about my situation is greatly appreciated. Very selfish of me to ask you to spend your time helping me, but I can't tell you how much I appreciate it. I feel like in reading your posts, you all are more insightful (and caring) then the doctors who are taking care of me (who, by the way, are all very nice people). I have to say, my faith in the goodness of people was renewed when I saw this forum. My hope is to pay it back when I learn of my diagnosis and have something to share.
Thanks for your help and I wish you all the best as you navigate your own situations.