I’ve been gone fire a few months trying to get some answers but now I’m at the end of my rope and and I need some second opinions from people who care.
So I’ve had TN for ten years and in September I had an awful flare up that lasted until December. In that time I had some pre syncopatic(fainting) episodes in class where my left eye snaps shut and I lose control of the left side of my body and nearly faint (I have all the symptoms of fainting minus the blacking out). Since then I have had worsening neurological symptoms such as left sided weakness (hand and leg. Enough that I have a foot drop and drag my foot when walking) shooting pains up the back of my neck (stimulated by turning my head the wrong way or too fast) and a problem with my eyes where they jerk away from what I’m looking at. All of them are getting progressively worse and now the weakness is spreading to my right side (I’m an art student so I need my eyes and my right side).
I have been through two neurologists who could care less who say it’s all in my head, my PCP believes me but isn’t certified to help, and a rheumatologist(the friend of my PCP) who is going to try to help but doesn’t know how. I also went to an optometrist who said I need to see a neurologist but the neurologist is the one who sent me to the optometrist!!
My brain MRI was normal (from October). I’ve also had a c-spine MRI which didn’t show anything but some slight degenerative disk disease. All my blood tests are normal (no Lyme,lupus,etc) and I had a negative Emg.
If anyone can help me I’ll be eternally greatfull. Right now it feels like my life is falling apart, all my plans for the future shot. I need some answers or suggestions desperately.
Thank you in advance for the help
I’m not a doctor but I would highly recommend finding a NEW neurologist willing to exhaust all testing efforts to try and find a cause for your neurological symptoms, in the meantime I would keep a detailed diary of symptoms ( when they occur, duration etc)
Did the other neuros suggest a lumbar puncture/spinal tap?
Unfortunately believe it or not sometimes a “cause” is hard to find in neurology, finding a physician or specialist willing to help you treat your symptoms in the meantime is important.
Huge (( hugs )) hope you get some answers/help soon,
From my reading Facial Tics (eyes ect) occur mainly in young people and people generally outgrow them. In fact you must have them a year before they are considered serious. Which surprised me. http://www.healthline.com/health/facial-tics?toptoctest=expand . It sounds like you are under considerable stress both from your physical conditions and perceiving that your life is moving past you. I know art school can be very stressful as well. Mimi has some great suggestions with keeping a journal of your symptoms And keep searching for a doctor that can help. It almost seemed to me that maybe something in your environment was/is toxic. New carpet or something like that. Some people are extremely sensitive to chemicals. But I think the stress is what is making it so bad for you. Have some faith in your body... especially being so young... some of these things may not be life threatening and fade in time. I have to tell myself this a well. I keep thinking the worse and in some case things have just mellowed out. Make sure you are drinking plenty of water, getting fresh air and sunshine. As much fun and laughter as you can in the circumstances. Keep searching for the combination of doctors and it is great that your primary physician is on you side. Keep sharing with us. Tina
I know it's a long shot. But sometimes TN can be related to MS. I actually have a friend that has MS and the mri did not show the demylenization of the nerves. Maybe this might be something worth looking into. Maybe try a second opinion from another neurologist.
ask for an FIESTA MRI most thourough....even if you have to travel to get it!