After reading a Tweet that discussed clinical trials, I decided to, once again, visit http://clinicaltrials.gov/. On this site, you can find various clinical health trials that are being done.
So, I typed in Dystonia and Cervical Dystonia. There were quite a few listed trials. But, due to my internal sensitivities (i.e. sensitivities to meds, autoimmune issues, etc.), I'm not willing to participate in trials that involve receiving medications or trials that involve invasive procedures (naturally, most of the trials involved chemically invasive procedures).
However, I did find one, potential trial that discusses the usage of Botox to treat Cervical Dystonia. It doesn't appear that this trial requires anything besides observing my response to Botox injections. So, I emailed the group that is overseeing this study to ask some general questions. We'll see what I get back.
I also put in searches such as "Grave's Disease and Dystonia." The search gave me nothing. Online, I have come across quite a few people who have this combination--just as I do. So, this would make for an interesting investigation.
I would love to be part of a research study or investigation that would simply investigate my medical history in conjunction with the history of others who have incurable, hard-to-treat diorders/illnesses.
Studies that I would personally like to participate/offer information to would be studies involving: Cervical Dystonia, Grave's Disease, The effects of Synthroid in treating Hypothyroidism, The effects of Natural Thyroid Hormone in treating Hypothyroidism, Metabolism in relation to Grave's Disease, etc.
As I said, I don't want to be poked and prodded with injections. I just want to be an observation and/or an oral history research participant--so to speak. Maybe the researchers could learn a few things from hearing about my journey.
Researchers and scientists could learn a whole lot more if they, first, focused on the "listening" before trying to focus on the treatment or drug aspect of studies.
Sometimes, it's just best to ask questions and listen to the answers when trying to figure out something--in this case, when trying to figure out the best treatment options for various health conditions. This listening approach could possibly lead to more curative conclusions versus band aide treatments.
Who knows? Pending the right conditions, maybe I'll be a "lab rat" one day.
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2 comments:
Hi Chyvonne,
I think that you're absolutely right. I'm sure that my Dystonia has something to do with my Chronic Fatigue Syndrome that started over 20 yrs. ago...I was just stating to my husband that there should be some sort of study done where multiple questions are asked, very imporatantly including other conditions that we have. Maybe we'd then have some real knowledge. Hugs, Sue
Sue,
As I've mentioned before, I don't believe disorders such as Dystonia just suddenly appear out of no where. It sounds like you had a compromised system (Chronic Fatigue Syndrome) prior to getting diagnosed with Dystonia, too. In the case of Dystonia, if a diagnosis cannot be directly correlated with genetics or linked to medication, for example, there should be more investigation into potential causes (i.e. infections). This could possibly help in understanding, treating, and possibly reversing the disorder in many.
However, it’s like you receive a diagnosis, receive treatment through Botox or medication, and that’s it. There is just not enough focus on the individual patient’s circumstances and prior conditions.
It’s good that we can have this type of dialogue. I appreciate your response.
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