All of us either dx with RRMS or with PPMS want to get an answer to the question:
My disability will become worse in the future or not and how fast will it come ?
For this reason we do MRIs every year or every two years to check for new lessions in different areas of our neuro tree.
A very interesting study published in the Journal of Neuroimaging one month ago (end July 2018) claims that Brain Lesion Atrophy May Indicate Worsening MS.
For decades, clinicians treating MS have interpreted the appearance of new or expanding brain lesions on MRI scans as a sign that a patient’s disease is getting worse.
The new study finds it may be the atrophy or disappearance of these lesions into cerebrospinal fluid that is a better indicator of who will develop disability.
The five-year study, conducted by MS researchers in the Jacobs School of Medicine and Biomedical Sciences, was published in the Journal of Neuroimaging.
Similar findings also resulted from their 10-year study of 176 patients that they presented at the annual meeting of the American Academy of Neurology (AAN) in April in Los Angeles.
Manow, it's Fancy1959. Researchers and their studies are very informed and provide interesting material to read.
They oftentimes forget some very important facts when they draw their conclusions. They themselves are not experiencing any of the joyous worsening of disability that MS patients experience. To me, their initial statement has a flaw in their study by the simple fact that they omitted secondary progressive MS patients. If you don't look at the entire picture and the entire MS population you are not conducting a thorough study. Secondly they're leaving out the fact that we all know that each and every individual who has MS is affected differently at different times by it. Now how do you tangibly measure that I ask?
And finally they are forgetting or choosing to omit one fact that 95% of us in the chat room are dealing with. MS is a progressive disease that worsens over time. This is the very nature of the Beast we battle each and every day. Some of the very worst activity can be the silent activity that we don't feel and we have no clue that is progressing until things are not working like they're supposed to. Be that your hands, your gait, your balance, your cognitive abilities, your bodily functions, and the list goes on and on.
With some of the new DMT's on the market there is hope now to stop progression of disability. Once we can stop the progression and rein this Beast in, then perhaps we can find a way to cure it. Until the researcher themself are all battling MS they lack the incite in the knowledge that is fundamental to all patients fighting this monster. That's simply my two cents worth. Because I often find is easy to talk about things you have no first-hand experience with but often times your views are lacking information because you have no clue and have no first-hand knowledge of the disease you're researching. It makes a big difference. Fancy.
Fancy1959 Well said, and you are definitely the voice of experience. While the Neuropsychologist that ran tests on me in July says "I did well, am holding up great." He is not walking in my shoes or experiencing the worsening of symptoms that I am feeling almost daily. Thank you my friend.
Manos A neurologist last year chided me for answering his question about MS. In the heat of feeling dismissed and diminished, I wrote him a letter which I never mailed.
He asked about my biggest fear, I answered, the unknown. He chided me for wanting to know the future.
I see from this post that I should have been more specific. It's the uncertainty that haunts me. I am more and more obviously disabled. Will I continue a slow decline? Will I stay as I am? Will my abilities precipitously decline And what then? If I become unable, what then? I won't dwell on this, but it must have felt good to be a smug professional and sit in judgement.
This disease batters us physically, psychologically, and emotionally. Most research sticks to the safety of clinical, physiological efforts and many doctors can not respond to any thing beyond the clinical. Okay, I'll yield the floor, step away from the podium, and be a good girl again. Rant over.
Hey Goat. I do not permit being treated that way. If I feel that I am not being taken seriously or not included in decision making of how I am to be treated, then I have no issues with telling a doctor that he/she/it is fired and find a better one. I have fired 3 doctors over the years and now have found a team who are in contact with each other to decide collectively how to keep going as I am for as long as possible. Do not be afraid to do the same. Besides, it is great to see the look on their face when you tell them.
Chameleon3 Aaron If it were easy to find MS specialists, we would all be much more free to challenge authorities in the heat of the moment. In isolated communities, it is often difficult to find a neurologist, let alone a good one specializing in MS. I have now engaged with six different neurologists, 2 of whom were MS specialists. Unfortunately, I live more than 5 hours by air from the best of the lot! For those in So Calif, she is at USC-Keck.
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