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After 3y, I'm still well.

PostPosted: January 20th, 2015, 1:23 am
by submarine
Just want to share my experience of those struggling experience all these 3 years. (you can find my threads by searching it.)

After 3 years, I'm still well. I have almost no twitch, milder tremor and more acceptable pain.

I was frightened 3 years before and I checked all possible neurological symptoms, visited numerous neurologists in my country.
I have clear Brain w/o contrast, C-spine w/ contrast MRI, normal SEP, but delayed VEP.

Since the abnormal finding in VEP, MS/NMO was suspected. But I have no finding on MRIs, and I get fibromyalgia as a diagnose in most of the neurologists. One still suspect that I have something to do with NMO but much milder. I underwent AQP4 test with negative result. Again, not sufficient finding to diagnose.

During those days with unbearable pain, I took narcotic pain killer everyday along with Lyrica. And when I'm on a flair of pain, taking steroid does help.

It seems no doctor could gives me a answer about what's wrong with me. And no doctor is trying to find the answer now. I have no need to have any further examination unless I develop serious symptoms such as visual problem, weakness, abnormal sensation. But luckily, I have no such symptoms except minor tremor and unexplained pain.

Now I visit one neurologist every 3 month to take supportive drugs for better blood circulation. My pain gets milder and I take no pain killer or lyrica. I'm trying to get along with those symptoms.

I understand that you might be anxious about what's wrong with you. But sometimes, it takes time for doctor to know the answer. Take a breath and listen to the doctor. Stop googling any material that might scare you. In most case, if the doctors say you'll be fine then you will be. Follow the instruction given by doctors and make some changes in your life. I do believe lots of the neurological symptoms are closely linked to stress or anxiety. Your worries worsen your twitch and vise versa.