Cervical Dystonia/Essential tremor
Dec 2, 2
By: Rae Edelman
I had gone YEARS not properly diagnosed. I have probaby had this since birth, as most of my pics from growing up, my head is always tilted and I remember pain. It was when my oldest son turned 5 (he's now 22) that I started looking for answers when I could not cut his birthday cake, but even then it took many years to get a diagnosis. I finally got diagnosed in 2005. I had DBS done in 2009 and have had nothing but issues since. Symptoms have gotten much worse over the past year. I have had to have my battery replaced 3 times already and think I will quickly be coming up on a 4th replacement, but that remains to be seen. Pretty much exactly a month ago I had to make the decision to stop working. My place of employment is allowing me to get unemployment while I go the the grueling process of applying for and waiting for disabiliy. There is much more to my story but that is it in a nut shell!
The basics of you story Iâm 39 I have a variety of invisible chronic illnesses along with a family history of similar issues and in my childhood pictures, my head is always tilted to the left and now I have scoliosis probably severe, dystonia cervical spasms not diagnosed with cervical spasms specifically in the neck diagnosed along with fibromyalgia and my mother has RA, lupus, the variety of all similar issues. I was on specific medication as a child. And we all have mysteriously on us and my daughter also had a bone marrow transplant due to pink pony anemia the platelet kind and I found these are all connected with the same mutated gene. Very rare but also my family I said for my daughter and my dystonia all suffer from an invisible illness most likely in the same family as my daughters pink honey anemia and dystonia most likely EDS or MDS secondary cancer for my daughter but all of these are very similar. I have a feeling since she said thereâs more to the story We may have similar stories. I do know one thing not many things can give you the stuff. Maybe about 4 to 5 main contributors. Since you noticed the same thing I did as a child. Iâm 39 almost 40 and my body is miserable. But I move forward.
