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Posts (4)

May 29, 2018 · Anyone dealing with Dystonia? in Brain & Nervous System

I have been diagnosed with cervical dystonia but I feel it throughout my whole body. It mainly affects my right side. After 6 years of treatment my neuro said she would refer me to the Mayo Clinic. However, she said it was difficult to get accepted. Is there anything I should do while I am waiting to hear? Also, I am finding the Facebook Group of Cervical Dystonia Support Forum to be helpful and has a lot of additional information.

Jun 27, 2012 · After Friday and Saturday dealing with pain so severe I called both in Just Want to Talk

After Friday and Saturday dealing with pain so severe I called both my children to tell them I loved them because I didn’t know if I was going to make it,—I not only made it, but feel really good today- Tuesday. Yay!

Jun 24, 2012 · Mixed Connective Tissue Disease in Digestive Health

Hello, I am a newbie to this forum, but read your story and I can so relate to your health issues. Like you, I recently had a thyroid biopsy and it was benign (thank God!). I also have had issues with muscle knotting and spasms, joint pain and overall flu like symptoms which started in 2003. I have spent the last two days in bed writhing in pain and suffering from complete exhaustion. I have had a relatively good last few weeks, but now I am so sick. I can’t take tramadol because it makes me throw up. I only can take the max dosage of ibupofen. I have never had red spots on my joints, however. I do undersand and empathize with your pain. Pain is invisible. No one truly can understand how you are feeling. I just received the news from a second doctor I have dystonia. I am so weak I couldn’t pick up a cleaning bucket today. I have fibromyalgia, IBS with chronic constipation, migraines, continual hair loss,brain fog and memory trouble. All brain MRI and blood work turn up nothing. Now that my body is distorted and leans to the right side people notice and they seem to understand more about how much pain I am in. I am trying so hard to stay positive. So should you! Let’s think of it not as an illness, but as a temporary medical crisis. Tryt taking warm baths with epsom salts and lavender and rosemary essential oils. This helps me the most. The oils are anti-inflammatory. You can soak your whole head, too. It’s very good for the hair and smells so wonderful. Put on some music, light some candles and you will relax and get some relief. Best healing wishes, my new friend.

Jun 24, 2012 · 2nd opinion of doctor confirms diagnosis of dystonia. Are botox and Ldopa in Just Want to Talk

2nd opinion of doctor confirms diagnosis of dystonia. Are botox and Ldopa my only alternatives? I hurt so much but have had such bad reactions to drugs before. I think drugs are what started this mess 10 years ago. Anyone out there have any ideas for me?