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undiagnosed movement disorder

Brain & Nervous System | Last Active: Apr 19, 2023 | Replies (108)

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@swift

It's hardest thing not understanding why your going through this difficult time, being in limbo we sometimes say, tis stressful and hard to deal with, not knowing is half the battle somewhat overwhelmed by things around you especially if the doctors can't understand why your body has reacted in some way, this is just stab in the dark , do you or have you had mercury fillings in your teeth ?! I've had similar thing happened to me something makes my body move without my saying or doing when I walk can't stand up or wobbling like I've been drinking when I am almost tea total ( so we say in England) doctors can't understand and because they are not able to understand sometimes they don't want to see you anymore. It's definitely frustrating.i don't know whether you have any other illnesses autoimmune diseases or family members had , but might be worth ask doctor what you think, triggers this off, where /when did this start for you ?! I've found chillies turmeric ginger root dandelion root all helps and especially taking sugar out of my lifestyle changes. Hope this gives you some peace of mind just knowing that your not alone can sometimes help. try to look for things that bring you joy , birds , horses mountain sea view ... Keep a journal helps too ... Kind regards swift hug from England

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Replies to "It's hardest thing not understanding why your going through this difficult time, being in limbo we..."

Thank you @swift. I don't have mercury fillings...I've been in limbo for about a year and a half. My symptoms and neurological exams show a neurological problem but the specialists have not been able to determine a cause. Therefore, I continue to go through various tests to rule out causes. Its the way neurological medicine works. I get it, but in the mean time my quality of life continues to suffer. I have recently completed a Masters degree in environmental law & policy. Unfortunately, I feel frozen in my job search as I can barely walk. The fatigue, muscle weakness, and spasticity are so unpredictable. How can I possibly maintain a typical 40 hour a week job when I can't drive, can't stand/walk for normal periods of time? I can't qualify for disability without a diagnosis. I have six months until my students loans begin being charged...it's all a bit depressing and there's no where to go for help. I share this not to be negative but just to share the truth. I'm sure there are countless others in the same situation. My iron infusion was a complete train wreck because of insurance loopholes and policy. From my perspective I just want a diagnosis and treatment. It shouldn't be this hard for anyone.

I understand your frustration a lot. Hang in there! Its a long journey......