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It's Time to Show what you've Learned about MS!
I'd like this discussion to show what you've learned about MS. Specifically, what you've learned about having MS with NO continued VISUAL lesion accumulation see via MRI, while continuing to experience daily limitation or disability.
We stress here often that existing damage causes limitation and disability. It's a simple fact. But, some have been told because of MRI inactivity, they may not have MS.
Unless your doctor suspects another disease process could be at play here, you should continue to treat your MS.
Please, list what you've learned:
I'll start.........
1) Stable MRIs do not mean, "You don't have MS"
We stress here often that existing damage causes limitation and disability. It's a simple fact. But, some have been told because of MRI inactivity, they may not have MS.
Unless your doctor suspects another disease process could be at play here, you should continue to treat your MS.
Please, list what you've learned:
I'll start.........
1) Stable MRIs do not mean, "You don't have MS"
Bumping an oldie but goodie.
Hope this helps our newly diagnosed. It's both informational and inspirational :)
-shell
Hope this helps our newly diagnosed. It's both informational and inspirational :)
-shell
60.I have also learned I am non invincable.
70.I have a whole new different view on my life now. On life in general.
71. How important it is to love and let yourself be loved.
73. I AM ALSO THE HAPPIEST I HAVE EVER BEEN IN MY LIFE. I APPRECIATE EVERYTHING SO MUCH MORE.
74. Yes, alot of things about this disease really SUCK, but there is a reason why we all have this disease. And all of us will one day know why. and so will all our family and friends who wonder and ponder "Why is this happening to her/him. Everything was going so well after..."ooooooops a little personal w that one
Thank You God, because I know there is a reason.
Awesome and beautiful comments on here! Great job on this Shell, and all u amazing people that I have in my life now. Much love to all of you!!
Huggy hugs hugs hugs!!!
Kelli
58. It has an up side for me it made me value my health more and has taught me to constantly reinvent myself. I am happier than I was pre diagnosis. I am doing things I never dreamed I would be doing like Dressage riding, training Service Dogs, and turned me into an activist. I never dreamed I would be speaking to lawmakers and working with organizations to help those with disabilities. I am learning to take some risks and get outside my comfort zone.
59. I have learned I do not have to be an expert on anything. I can learn all I can but it is okay not to understand something.
Alex
59. I have learned I do not have to be an expert on anything. I can learn all I can but it is okay not to understand something.
Alex
We're all so smart, lol
But, we are!!!!!!
I'm going to make this into a Health Page. Anyone opposed????
(((hugs)))
-Shell
But, we are!!!!!!
I'm going to make this into a Health Page. Anyone opposed????
(((hugs)))
-Shell
55) What I've learned about MS is that we really don't understand the disease at all. We see the damage left behind by the disease - like elephant footprints in the Jello in the fridge. But we haven't really figured out why lesions form, why axons break, whether we all have the same disease, or different diseases that leave the same kinds of footprints. Maybe axons break long before the lesions form, and the immune activity is just to clean up the axon breakage. Maybe the flare from the inflammation is a necessary immune response. We don't know - all we have is a mouse model with similar neurological damage that we can experiment with.
For example, I'm one of the people with a 'relatively light lesion load' considering my symptoms. According to the OCT and the thickness of my retinal nerve fiber layer, I'm actually secondary progressive. So lesions don't tell the whole story.
For example, I'm one of the people with a 'relatively light lesion load' considering my symptoms. According to the OCT and the thickness of my retinal nerve fiber layer, I'm actually secondary progressive. So lesions don't tell the whole story.
Lulu, I agree whole heartedly on the emphasis placed on the MRI, my story and clinical exam should give them a clue. Thanks Shell for bringing this up!!
Hugs, Pam
Hugs, Pam
Too much emphasis is placed on the MRI and not enough on the story and clinical exam.
54. Lesions on spine may not show up on MRI, but definitely will show up on neurological exam.
What most strikes me is that the more I learn about MS the less I seem to know and the more complicated everything becomes. Worse, there seem to be a great many things that no one knows. For example, no one knows what causes MS or exactly how it works.
The patient lit they hand you with a dx is hopelessly oversimplified. The four types of MS aren't based on biology but are a (less than unanimous) consensus of experts developed for sorting patients in clinical trials.
The autoimmune hypothesis is just that--a hypothesis. The immune system and the brain are both incredibly complicated. The safeguards built into the brain and nervous system to stabilize it after development really do a number on the possibilities for neural repair.
Since there's no biomarker for MS, there's no way to ever invincibly shake the doubt that maybe you have something else.
Great thread, Shell.
sho
The patient lit they hand you with a dx is hopelessly oversimplified. The four types of MS aren't based on biology but are a (less than unanimous) consensus of experts developed for sorting patients in clinical trials.
The autoimmune hypothesis is just that--a hypothesis. The immune system and the brain are both incredibly complicated. The safeguards built into the brain and nervous system to stabilize it after development really do a number on the possibilities for neural repair.
Since there's no biomarker for MS, there's no way to ever invincibly shake the doubt that maybe you have something else.
Great thread, Shell.
sho
46) That People who have MS are some of the most caring, supportive, and amazing people that there are and Were made better because of it!!!
44) In most cases forget about a quick DX.
45) Get ready to see many DR'S, and have a butt load of tests done.
( here -here, Like Bob says- your male and in your 50's-MS is unlikely)
45) Get ready to see many DR'S, and have a butt load of tests done.
( here -here, Like Bob says- your male and in your 50's-MS is unlikely)
COMMUNITY LEADER
41) Not ALL neurologists are able to dx ALL neurological diseases.
42) Its not the number of lesions but where those lesions are that make all the difference.
43) MS really S_U_C_K_s but the individual people with MS dont!
42) Its not the number of lesions but where those lesions are that make all the difference.
43) MS really S_U_C_K_s but the individual people with MS dont!
What was the question again...I forgot already! :)
41) The brain still functions, just a lot slower...Learned that today!
Dennis
41) The brain still functions, just a lot slower...Learned that today!
Dennis
30 or whatever number we're up to....
39) Maybe it means those drugs that we inject regularly really are doing their job.
40) even the doctors don't always know how to interpret what they don't see.
39) Maybe it means those drugs that we inject regularly really are doing their job.
40) even the doctors don't always know how to interpret what they don't see.
I've learned to ignore comments from doctors (not neuros necessarily) that "MS only presents in young people".
***Good idea for a post Shell****
***Good idea for a post Shell****
I've learned that fighting MS alone for the last 3 yrs was a really stupid lonely idea.
I've learned that "a healthy state of denial" isn't really that helpful :)
I've learned that now having another flare to throw it back in my face, it's time to face it!
I am currently learning through this flare that it's ok to let people know I have MS. It's not the end of my world.
You all have taught me that life keeps going just as hard and fun as we want it to regardless!
THANKS
I've learned that "a healthy state of denial" isn't really that helpful :)
I've learned that now having another flare to throw it back in my face, it's time to face it!
I am currently learning through this flare that it's ok to let people know I have MS. It's not the end of my world.
You all have taught me that life keeps going just as hard and fun as we want it to regardless!
THANKS
28) 1.5T MRIs aren't useless; many of us here were diagnosed based MRI findings from the 1.5T machine.
I learned (am laughing as I write this) that spinal lesions can be found both in and on the spinal cord....
24) It is very possible that several years can pass without new lesions showing up on MRI's. That does not mean there is no disease activity or damage being done.
25) Lesions can heal.
26) Be cautious when told you have "mild" or "benign" MS.
27) Stay away from neurologists who don't look at the MRI's themselves.
25) Lesions can heal.
26) Be cautious when told you have "mild" or "benign" MS.
27) Stay away from neurologists who don't look at the MRI's themselves.
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