This week I am lucky enough to get to get up really early to be at the Cedars-Sinai Imaging Center by 9:30 A.M. Tuesday and Wednesday for a Nuclear Thyroid Uptake and Scan to see what the thyroid nodule is doing. Also I have an order for X-ray of Cervical Spine, to take a look at the Flexion/Extension and check for Atlantoaxial Subluxation. A previous scan shows mild bony degenerative and spondylotic changes throughout my cervical spine. Lloyd says I cannot complain because doing the test will help us see what needs to be done to improve my health.
After a little search with the thing they call Google, I ran into this article “Rheumatoid Arthritis of the Cervical Spine Overview of Rheumatoid Spondylitis” and reading how different types of compression in that area cause death for 25-30% of patients and in outcomes that “10% of patients with rheumatoid arthritis may die from brainstem compression that is unrecognized before their sudden death” I will go with Lloyd’s suggestion that I am lucky and that we may be able to prevent or take care of issues early. But whenever I quote percentages on information I find online, Lloyd see it a different way. He says that 70-75% of patients do not get different types of compression or 90% of patients with rheumatoid arthritis do not die from brain stem compression.
But I look at this a little different, first it is just one website with information that I have searched about. What is the age of the data they are referencing? Who collected that data? How was the data collected? Above I just quoted the website but I have not verified the data. Most patients or bloggers do not dig that far into statistics on the data they are referencing. The only thing in the above quotes that concerned me was the word unrecognized. As a patient with Rheumatoid Arthritis I see many things that go unrecognized. This quote had the following reference “Mikulowski P, Wollheim FA, Rotmil P. Sudden death in rheumatoid arthritis with atlanto-axial dislocation. Acta Med Scand. Dec 1975;198(6):445-51. [Medline]“. My first thought is do 10% of Rheumatoid Arthritis patients still die from “unrecognized” brain stem compression like they were in 1975? Have doctors found symptoms to look for to help prevent this from happening in the last 37 years? Has treatment of Rheumatoid Arthritis improved so much that this is no longer an issue? To me there is always more to be researched and patients are lucky to have that thing called “Google” to use.
During a weekly online Rheumatoid Arthritis patient (online support group) through TweetChat which is on Sundays via TweetChat – #rheum at 12:00 P.M. PST this week Anetto mentioned this article Dr. Google is currently only medical student Google. This article discusses the use of Google by patients, how sometimes doctors disregard something a patient finds online and how patients disregard the recommendations of going to the ER to take care of the stroke or appendicitis they are going through. Why does reading go to the ER not as effective as hearing a doctor say go to the ER? It also discusses how the data aka listings on Google which are getting more reliable. I can agree that as search engines have evolved one of their goals has been to provide the users better data, trusted data. This has been happening for many years. When search engines first started ranking websites it was pretty easy to get that number one spot, in fact it was pretty easy to get the top 100 spots if a person wanted to which made the listings in search engines less reliable.
What can be better than finding reliable listings on search engines? The social markets that is now available to patients and doctors as well as patient blogs and communities like RAwarrior.com. I can not forget to mention Rheumatoid Patient Foundation created in March of 2011 which brings information to both patients and the medical professionals that work with us to improve our health and care. How does that change what doctors and patients know about rheumatoid arthritis? Well recently Kelly Young of RAwarriror.com did a poll with RA patients about stiffness and the results showed “Poll Shows Textbooks Wrong on Rheumatoid Arthritis Morning Stiffness“. The poll found that only a small percentage (25%) of patients had stiffness only in the morning, or how Lloyd would put it 75% of patients deal with stiffness at times other than in the morning. Personally I have had stiffness be 24 hours a day for months at a time, but the stiffness is always greater in the evening or night hours. When I am enjoying pain free days I am usually still dealing with stiffness at night.
Today we have something available to patients and doctors that was not available to my Mother as she led her life with dealing with Rheumatoid Arthritis and getting bad information from her only source of information at the time, a doctor. You see towards the end of her life her doctor suggested she no longer needed the medications for her RA. It was suggested the disease had run its course and could not cause any more damage to her joints. So instead of taking drugs that would stop the inflammation, she only took the drugs that stopped the pain. This failed her because she developed Felty’s Syndrome, which according to doctors I have seen in the last 9 years does not happen anymore because of the newer drugs on the market and they have not seen in 20+ years. They may have not seen Felty’s Syndrome in 20+ years, but I have. My mother passed away on September 25th, 2005 from Felty’s Syndrome, a complication of Rheumatoid Arthritis that is only seen in 1% of patients with Rheumatoid Arthritis according to many popular websites I have found using Google.
This is why I agree with Rheum4us.org, the RAwarrior community and many other Rheumatoid Arthritis patients that are asking for the name of our disease to change. It is not fair to deal with a disease that suggests it is just Arthritis by the name. That suggestion brings confusion to patients, doctors, caregivers and our communities. Arthritis is just one symptom of our disease, it is far from the only one. I still use the term Rheumatoid Arthritis because millions of patients are searching for information on Rheumatoid Arthritis but I choose Rheumatoid Autoimmune Disease as the real name of my disease because I know better then to just believe it affects only my joints. It is time for patients and the medical community to correct this issue and get rid of the myth that Rheumatoid Arthritis only affects the joints, when we know today that it effects the whole body.
The name change and the use of the new tools available to patients, caregivers and the medical community could possible help prevent or reduce deaths by Rheumatoid Arthritis. Statements like “RA does not kill” coming from a Rheumatoid Arthritis doctor makes me thankful for the ability to choose another doctor. It is time for the myths to die, the name to change, as well as the patients, caregivers and medical community to gain the knowledge available to them through this wonderful thing available to so many called the Internet. If you are a patient, caregiver or part of the medical community and are not a member of Rheumatoid Patient Foudation please join today and gain access to much needed educational information and patient feedback. The medical community can also find information at some conferences that Rheumatoid Patient Foundation attends, look for Kelly Young as a speaker and the Rheumatoid Patient Foundation booth.