tag:blogger.com,1999:blog-1736295125267778049.post9160996396384302240..comments2024-01-11T08:28:08.760-08:00Comments on Perseverance: YOU Be that One in a Million!: Invisible Diseases Speaking Out: "It's About Time"Dr Margaret Arandahttp://www.blogger.com/profile/11233294700250409713noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1736295125267778049.post-24618036806804813632013-01-27T04:52:13.451-08:002013-01-27T04:52:13.451-08:00I'm sorry that your story is just one of many,...I'm sorry that your story is just one of many, many similar stories. And that you had to go through this as a child with a sick mother...that is hard, almost too hard for any child to bear. I know you are mad, and I feel the years and the worn out nonsensitive 'remedies'. All too common. I hope your mother is better now with a diagnosis, and I'm sure that you were her happiness in everything. Now you are grown up with some loss of your childhood, because you had to be the caregiver, too. I get it. We need you to stay with us and let's turn this into something good, something positive, something that changes things for the future. I can't do it by myself. So stay with me and know that I'm not going to rest until our story is told. Until it is told over and over again and someone somewhere does something to make it better for everyone. IT's About Time!<br /><br />Dr. Margaret Aranda<br />www.drmargaretaranda.blogspot.comDr Margaret Arandahttps://www.blogger.com/profile/11233294700250409713noreply@blogger.comtag:blogger.com,1999:blog-1736295125267778049.post-78979431899180166112013-01-27T00:37:49.905-08:002013-01-27T00:37:49.905-08:00I have never seen a chart like this before and it&...I have never seen a chart like this before and it's about time! I have had to deal with this for as long as I can remember in more ways than one. I grew up with a mother who had what should have been a visible disease, a meningioma brain tumor she was told could have been growing for decades. She saw lots of doctors and not one ever told her to go to a neurologist or to get an MRI. She really suffered. Lots of antibiotics for bladder infections, an operation on a bad foot, being told she was just fat and depressed, almost dying and being told if she hadn't of fallen when she did that she would have died within two weeks -- unacceptable! As a doctor, I'm sure you can appreciate just how difficult that would have been to be around as a child growing up. As for myself, just enjoy your day, stay out of the weather, gain weight, lose weight - TAKE THESE, I think you're a little depressed - TAKE THESE, you're just really allergic - TAKE THESE, we need to do something about that brain fog - TAKE THESE, you won't feel like exercising without something - TAKE THESE. From seldane to vioxx to topomax and in between, I have taken meds that only did harm as far as I'm concerned. The benefits outweigh the risks they say -- but I don't buy it! My symptoms never went away. Me to the doctor - I don't think I should have had physical therapy before doing an MRI. Doctor to me - I think you need to go to a psychiatrist -unacceptable! Other things I've been told are I don't know what to do with you, these collagen diseases are tricky (said to me by my old pediatrician that I ran into when I was older -- he had never spoken of collagen diseases to me or my mother and had offered absolutely no help on the matter), we'll need to watch and wait (said to me by my neurologist as I continued to run around lost with no direction and no real quality of life). If the goal of waiting is so that a patient can sleep her life away, than he succeeded -- but that isn't a life and no patient wants to wait for answers. Dr. Margaret Aranda, thank you for being the voice of patients with invisible diseases. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1736295125267778049.post-1493201332418956922013-01-20T20:48:59.976-08:002013-01-20T20:48:59.976-08:00Yes, Chiari Malformation is an Invisible Disease ...Yes, Chiari Malformation is an Invisible Disease that defies medical explanation because the diagnosis is not in the mind of the evaluating doctor. Many doctors have simply not seen one patient with this disease, so they don't recognize it. Maybe if the doctors had to go to get formal Education in Invisible Diseases, it would help for them to go through a typical presentation, tests, findings, and a diagnosis. I'm sorry for all the suffering you had to go through before you got a diagnosis. But I'm glad you are here to be a Voice, and to help pave the road for others behind us.<br /><br />Highest Personal Regards,<br /><br />Dr. Margaret Aranda<br />http://www.drmargaretaranda.blogspot.comDr Margaret Arandahttps://www.blogger.com/profile/11233294700250409713noreply@blogger.comtag:blogger.com,1999:blog-1736295125267778049.post-74763889653808799632013-01-20T15:05:55.205-08:002013-01-20T15:05:55.205-08:00Having Chiari Malformation I know this all to well...Having Chiari Malformation I know this all to well took me over a decade and a grand mal seizure in a dentist chair to get there attention and a Diagnosis and that was only the beginning of a long journey that is never ending :(Sheilahttps://www.blogger.com/profile/08453612828544791324noreply@blogger.com