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Chorea, chronic pain, anyone else like me?

I will try to be brief as my story is kinda long. I am a 40 yr old male. About 6 years ago I noticed decrease in my hand strength. Slowly I have had symptoms cropping up. About 4 years ago I started having episodes of all over 'shivering'. These episodes last anywhere from 20 min to an hour. I remain conscious during the episode and I feel like I have been hit by a bus for two days after. I still continue to have these to this day. In Oct. 2010 I started 'shaking' and have not stopped. I also started having chronic pain. It is shooting, stabbing, throbbing..etc. The pain lasts all day long. I also started having muscle cramps and charlie horses in my arms, legs and feet. I have now had a charlie horse in my left foot for 2 years. I went to my regular pcp and she sent me for brain MRI and referred me to a neurologist. I waited nearly two months to get a neuro appt. I got an appt in Jan 2011. I had neuro exam, major blood work( including heavy metal workup,ck,rpr) brain MRI, cervical and lumbar MRI, nerve conduction study, sleep study and everything has come back normal with the exception of slightly low vitamin D. My 'shaking' has been diagnosed as choreathetosis. The neuro diagnosed me with fibromyalgia because he couldn't find anything else wrong with me. He basically never told me why I was shaking even after asking him why my legs continously rub together. I am being treated with several medications which may dampen the pain but the pain and cramping never leave. Some days are definitely worse than others. I cannot stand or walk for very long without causing major cramping and pain and I will definitely pay for it the next day or so. I finally got my medical records and that is how I found out the movement was called chorea. Fast forward nearly 2 years...I had another round of bloodwork and it is all normal. I am seeing a movement disorder specialist who's assessment of me is paroxysmal choreathetosis. This neuro thinks I have a progressive hyperkinetic movement disorder of unknow etiology and had me genetically tested for Huntington's disease and DRLPA. These test came back fine. My neurological exam came back with "unable to tandem walk, unable to heel walk or toe walk". She said I was very writhing and snakelike and had inturning of my left foot and hand. I had blood smear done to check for acanthocytes..it was normal. I had ceruloplasmin tested...it was normal. I had another ck enzyme test done...normal. I had another rpr test...normal. I had a full lipid profile done...normal. They have tested me for all of the autoimmune markers...normal again. The only thing that has come back different is my cervical spine MRI. The first one I had done in jan. 2011 came back as minor bulging at c6-7. The second MRI came back (mind you, it has only been 18 months) as degenerative changes that are advanced for the patients age. I also began seeing a pain management doctor who has assessed me with cervical spondylarthritis, generalized arthritis and muscle pain. He has referred me to a rheumatologist. I do not want narcotics and he said they dont work on my kinda pain anyway. My muscle movement disorder specialist has now referred me to the Mayo clinic because she said she doesn't know what is causing my choreathetosis. My life has completely changed in a short time and I am always moving, always in pain..yet I can honestly say that I try to focus on other things because I wouldn't make it. So now I have an appt set at Mayo and hopefully someone will know what this is. I need someone to see the 'big picture' and connect the dots for me. At this point I need answers. I would like to hear from anyone suffering with anything similar.
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Avatar universal
Hi, I see it was some time ago you posted this so I don't even know if you will get this response. Firstly I am sorry for all the pain & suffering you are going through. I can relate to your story. I am a 33 yr old female, I too had accumulating symptoms over some years, & have gone through so many of the same tests with normal results, initially I was diagnosed with M.E/cfids but more & more painful and unusal things added to the never ending list of things wrong with me. I started getting the agonizing muscle cramps, widespread body pain, all different types aching, shooting, searing, burning, lightning shock like, muscle twitches. Over time this pain became immense & chronic. I struggled to stand, walk or do minimal exertion from basic day to day tasks. I had months to years of worsening relapses leaving me bed bound. My mobility deteriorated. All this still in my 20's with a baby to look after. I had many strange events which led me to A&E, like heart attack like episodes, sudden paralysis in a leg, or arm but it was temporary. These kinds of things didn't show up anything on tests. I started to have cognitive & memory problems. Had full body shakes, trembling, tremors became permanent in my hands, lost fine motor dexterity. Then I started having involuntary movements, arms, legs, head/neck jerking, twisting, fingers moving on their own. It took me years of back and forth to Dr's, being dismissed. I eventually got diagnosed with Fibromyalgia, & when movements became more widespread & constant it led to me being tested for & diagnosed with Huntington's Disease, I also have Osteoarthritis, Endometriosis & IBS. We may not have the same conditions, however I too have gone through the turmoil of for years of being so ill, in agony & the fear of not knowing what is wrong. I now need a wheelchair purely from the severity of my Fibromyalgia. The excruciating pain I live with from head to toe through every inch of my body kills me. It is relentless all day, every day! The more I move my body, the more intensely it hurts. I also have neuropathic pain burning & shooting down my arms, hands & fingers. My deep muscle pains can lessen slightly if I rest my body completely flat & still for days. I used to just about get by with this, plus my medicines. Not anymore though, as my problem is, & will only get worse because my constant involuntary movements from chores & dystonia makes my Fibromyalgia pain so much worse. I am not even in the worse stages of Huntington's Disease yet, so I am so fearful of how bad the pain will get when my movements are severe & non stop. As i said before, the more my body physically moves the worse the pain becomes. I haven't found another living soul with the same problems, It's a dark & lonely place to be. Even my Dr's don't know how to help. Huntington's Disease is progressive & fatal, it will rob me of abilities to think, walk, talk until I become profoundly disabled & require 24hr nursing care until the end. As scary as that is, I am more terrified at the thought of being unbearable pain that no medication or pain killers will help, and being unable to speak to communicate my pain & distress. Sometimes i think I may have to take a quicker way out of this world before I get too bad, but I also strive to live to watch my beautiful daughter grow up... I am by no means suicidal, just don't want to die that long, painful miserable death. On that cheery note lol, I do get by with love, enjoying the little & important things in life & never take for granted this beautiful world. It has helped me enormously just to vent, communicate & laugh with others who understand chronic pain and illnesses online in forums & support groups. The best one I think you would find very helpful is called "Daily Strength" it puts you in touch with people who have all or most of the same problems, symptoms, conditions as you. I hope you finally get answers &  a name for yours, as well as a treatment or better yet a cure. Wishing you all the best for your future x

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