Hello Everyone!
I just wanted to share about being a patient in a clinical trial at National Institutes of Health for SM. I too, have been on the journey of learning about this disorder. Over the past two years I have cried a lot, been in intolerable pain, and watched my family be extremely concerned and carry that daily. I am a very driven person who refuses to let this get the best of me. I hated the way the medications or pain made me feel and hated how some doctors even told me my pain was really from being depressed. Hmmm..... After that particular doctor I had enough... I started trying to really take care of myself by eating better and reducing my stress levels as best as I could. I read many health books and ended up loosing a lot of weight in the meantime. Exercise has always been frustrating because there are limitations. In August of last year I grew tired of seeing my friends take Zumba classes without me so I decided to do some research. I came across NIH and discovered that there was a clinical trial that suited my symptoms. It was the best decision I ever made to apply. Since then I have seen some of the best doctors in the world and they all speak "SM". They all understand how I feel. They even made me feel validated and above all like a person/patient instead of a number on a chart. In the past 8 months I have been holding steady, we know that there may not be a cure for a long time but what I know is that I have a doctor or a nurse to communicate with as often as I need for my own questions and concerns or to help be the educator for the doctor in my local city. It has helped me tremendously and reduced my anxiety about having SM. Since I am feeling fairly good right now I want to pass this positive news on to you. Take a look at nih.gov for more information and go to clinicaltrials.gov to search for open an study that may suit you. I hope this helps and good luck to you all.