torticolis or dystonia or fnd

[Shadow35]

i have torticolis each month since 4-5month. It can last 2 weeks to 2months non stop. I can just have 2-3days without it. i start a bigger dose of pramipexole for my leg and it's been one week without stifness in my neek. I'm preying it gonna stay that way. If it fnd normally medication aren't suppose to work?i still have big doubt it's fnd. What do you think. i m' gonna wait 2 weeks free of pain before celebrating just in case. With the medication i almost stop having weird feeling in my leg that i need to run day and night, i have a little more energy and less stifness everywhere. I also have less pain in one of my eye. Don't know if it's related.

[Mum31]

I been diagnose with fnd a few years ago, I get seizures, tremors, migraines and every some time a strong pain on the neck that can last 1 week or 2. I do think that the pain can be related to a bad posture or a heavy lifting but with fnd the pain is more intense, gets stuck and last longer . Also when I get mild headaches I got pain on my right eye as well and can last like 2 days. My Doctor wasn't sure if I had epilepsia and cronic pain or fnd . I still got more test to have done, but one of them... I need to be 24 h with out sleep to record a seizure and I really no fancy that. So I wish you best !

[Shadow35 in reply to Mum31]

thank you. I don't know why but the pramipexol did wonder. I'm free of torticolis(have some for six months and more non stop), can walk faster, can normally use stair. Stop having back pain and definetly have more energy. It's been 4 weeks without sleeping during the day and was able to go to school and do normal things the rest of the day. For the eye i'm waiting for an ophtalmologiste. The pain last for 2 months (day ans sometime night) but it's almost over. Still seeing a black spot but lighter but i'm pretty sure my vision got worst and i feel it's gonna stay that way. Still have a ptosis since one year that don't go away on the same side. The new neuro didn't tought itxs fnd but send me back to my gp and recommend stopping medication with polyethylene glycol in it because each time i have a reaction. Easy to say but not easy to do some doctor don't beleive me and there's some in almost everything.

[Boeingbabe in reply to Shadow35]

after years of misdiagnosis , fnd, hemiplegic migraine, seizures, i am not dx with neurological lyme disease. Facial palsy is a symptom often misdx as bells palsy. The only other thing id be thinking is myasthenia gravis that causes ptosis. Get your bloods checked in armin labs to rule out lyme. It has nearly 60 weird symptoms that come and go! Best of luck!

[Boeingbabe]

sorry typo. I am Now dx with neuro. Lyme.