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Dystonia or TMS, or both?

Discussion in 'General Discussion Subforum' started by dempsey12, Apr 20, 2018.

  1. dempsey12

    dempsey12 Newcomer

    Hello all. I am new to this forum. I have never heard of TMS. A little over a year ago I started experiencing issues with my right/dominant hand. Specifically, my middle fingers would involuntarily try to extend whenever I was typing. I am an attorney, so I type daily. My issues were limited to my right hand during typing. Shortly thereafter, I was diagnosed with focal hand dystonia. The strange thing is that as I joined several dystonia groups and forums, it seemed as if my symptoms were somewhat different. Most people with dystonia get involuntary spasms or fixed postures, and there localized to one area. Specifically, those with hand dystonia typically get a clenched fist. I've never experienced that.

    Fast-forward to today and I have many different symptoms. Every so often, I have a sudden, large involuntary inhalations/breaths. I'll get maybe 10 of those a day. Also, most recently I have the most strange sensations in both of my arms. It's difficult to describe, but it feels as if my arms, and most notably my wrists, are uncoordinated. I will get the feeling when I am doing certain tasks like shuffling through paperwork, etc. I am able to carry out those tasks, but it almost feels as if my arms or wrists are doing strange things when in fact they are not. In other words, it seems to be more of an issue with my sensory perception as opposed to my motor abilities. Also, when I have a very deep yawn my upper arms and abdomen will flutter. Also, I will occasionally get extreme tension in the toes of my right foot. These body-wide symptoms are definitely significantly worse in times of stress or anxiety.

    I've been to see many doctors including my GP and a neurologist. They've done numerous tests and haven't found anything structurally wrong with me. The neurologist diagnosed me with dystonia and seems to chalk up all of my symptoms to that diagnosis. She has ruled out more serious conditions like Parkinson's. Now I suppose that because dystonia is a spectrum disorder, that could explain my symptoms. But dystonia in adults is typically focal and localized to a certain area. In my case I get these sensations throughout my entire body, most noticeably the strange uncoordinated sensations in both arms and wrists. So I am just reaching out to see whether anyone else has experienced these same symptoms.
  2. Dorado

    Dorado Beloved Grand Eagle

    I haven't personally experienced dystonia, but I have experienced severe sympathetic nervous system dysfunction from stress. I do have a congenital disorder (hypermobile Ehlers-Danlos) that can cause VERY severe sympathetic nervous system dysfunction to the point of some patients being disabled. However, in my personal situation, I think my disorder predisposes me to certain issues that are magnified by a thousand with stress, as the worst symptoms mostly disappear when I'm in a good place mentally. I'm not trying to discredit another patient's experience as Ehlers-Danlos is also a spectrum disorder, but I refuse to immerse myself in this type of endless babble that just makes life look terrible: https://www.pinterest.com/search/pins/?q=Ehlers danlos symptoms&rs=typed

    The reason why I'm saying this is to illustrate the fact that I know very well that the nervous system can 100% be affected by TMS, and the effects can range from minor to crippling. Additionally, I'm familiar with structural problems being affected by TMS, as well as issues that healed a long time ago but still cause symptoms from opportunistic TMS. With my sympathetic overdrive, I even had visible symptoms, such as constant fingertip wrinkling and skin dents, limbs that would turn insane colors from blood pooling, white fingernails, etc. The sympathetic nervous system can cause SO many bizarre symptoms!

    There are absolutely psychogenic (TMS) forms of dystonia, seizures, disorders that mimic MS, etc. See the following for a few examples of some people whose nervous systems went out of control from TMS: https://www.telegraph.co.uk/news/health/11635758/Psychosomatic-disorders-When-illness-really-is-all-in-the-mind.html (Psychosomatic disorders: When illness really is all in the mind)

    Do you fit the profile of a TMS patient? It sounds like your doctors have done a pretty good job of ruling out anything serious, so something tells me the answer is yes.

    Oh, and do yourself a favor: don't visit any dystonia forums. Any forum dedicated to health conditions will only hinder your belief that you'll be OK, and they make people sicker. Even "positive" discussions (e.g., "I have Ehlers-Danlos and am in pain 24/7, but swimming for 30 minutes a day takes 5% of the pain away! YAY SWIMMING! I wish I never had to get out of the pool, LOL. It makes life livable for a little bit...") convince people they'll be miserable for life. You won't be. I know I'm not anymore.
    Last edited: Apr 20, 2018

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