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Information---Misinformation---Use the Spectrum Libraries.
January 21, 2012 by Grace
Comments (5)
Hello all,
Just a friendly reminder. Please take advantage of the scholarly articles that are within the libraries. Watch the videos that are on the site. Learn from the literature---both past and current. Become a proactive patient.
I frequent a lot of different sites and receive a lot of calls from all over the world, and I am consistently stunned by the misinformation that is out there. Always when requested, I offer to supply Links to the specific literature or video that might help to answer a patient's query. Since the formation of the Guthy-Jackson Foundation research has blossomed, and strides have been made in the area of education. Still, there are many physicians who are unfamiliar with the disease. No, I am not saying that unfamiliarity with NMO means that a physician is not capable, and certainly one should always respect the opinion of their own physician. What I am saying, is that with a disease this rare, a patient really needs to take responsibility and educate themselves. Being forewarned is being forearmed. Familiarizing yourself with the literature is key.
As an example, I will use an episode from my own history. Several years ago, I left my home state and moved near Chicago. I was able to find an excellent neurologist at a prestigious facility. Within a few weeks of being there, I started to lose my vision. The neurologist was contacted, and I was advised to report to the hospital immediately for IV SoluMedrol. Upon arrival I told them that I was diagnosed with NMO, and after being processed I was sent to an examining room.
The ophthalmologist who came in to examine me looked at my medication list and said to me: *Mrs. Mitchell, why are you on Imuran and prednisone? Did you recently have a transplant?* I replied that *No, I have neuromyelitis optica and use the medications to prevent attacks of paralysis and blindness.* He said to me: *Mrs. Mitchell, why would you think that you might become paralyzed? And why are you requesting IV SoluMedrol? Neuromyelitis optica is a disease of the eye and most attacks of Optic Neuritis resolve on their own.* I insisted that the neurologist be called immediately. Within a half hour to forty five minutes, I was hooked up to IV SoluMedrol.
What's the point of this story? Simply that had I been uneducated about my disease, I might have taken the physician at his word and gone home without treatment, which could have resulted in irreparable damage to my eyes.
So folks, please read. Yes, I know that in the beginning it's difficult to understand the research articles, but the more you read the easier it becomes. Take responsibility and become a proactive patient.
Grace
Glen here I agree. Knowledge is empowerment. In addition to the Gunthy-Jackson site there is the the Transverse Myelitis Association at http:/
davebob 116 days ago
Gracie,
YES!! That was so funny! I was reading your posts in the hospital while I was getting my infusion. ( I finally figured out to to make my font bigger on my new macbook). You must have made a few phone call today and both you, me and Michelle M. were all on the same page today:)
You were calling on my home phone and I was getting ready to call you on my cell. Great timing! Love that.
you are an angel to me Gracie. I am truly blessed by you. Thank you for all your encouragement. I totally agree that it is critical to be a proactive patient, so I know that many of us appreciate your time and effort to communicate and post so much of the NMO research.
Well, I'm such a procrastinator and I need to pack. We leave in the morning for my doctor appointments....
I hope you have a joyful week,
lots of hugs,
Michelle
Michelle 116 days ago
Hello! This info comes to me at a very good time, as I'm really a bit naive about all of this and newly diagnosed (3 months). I have two doctors and as of last week one of the two believes that the medications are not all that necessary & we should have more of a "wait and see" attitude.. I have no desire to just "wait and see"..this is not a disease that you can do that with! The first set of infusions as well as the steroids has turned around my weakness/numbness/tingling in legs and arms and I believe the doctor that diagnosed me is right on track at this time! I have full 20/20 vision again (there are times that I have some blurriness in my right eye..but it doesn't hang around long). The other doctor, seems to refer to information from 10 years ago, that just wont work! Therefore, thank you so much for the information.. libraries.. additional websites.. it is very helpful to me!
Praying you all are doing well,
Angella L
AngellaL 115 days ago
Hi Angella,
You're correct that this is not a disease that one can approach with a lackadaisical *wait and see* attitude. I have a positive titre and declared as relapsing early on in my disease course. If not for timely intervention and treatment, I'm not quite sure where I would be now.
For me, the issue is all about education. I've got a wonderful neuro who has always encouraged me to learn as much as I can in order to be a proactive patient. It's a continuing process. You'll find that the more you read the literature, the easier it is to understand. I would never approach this disease with blinders on. Can some of the information be overwhelming? Yes. Is some of it a bit frightening? Yes. That being said, as the years have passed and as I have learned more it has become much less so. Keep learning.
Grace
Grace 115 days ago
A Rare Approach to a Rare Disease
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Hi Michelle,
We must have a telepathic connection because I just phoned you a few minutes ago. :-)
Gracie
Grace 116 days ago