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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"
2) You can't correlate lesions and symptoms. You can have many and worsening symptoms and a stable MRI.
COMMUNITY LEADER
3) Current MRI technology is suspected to miss upto 20% of lesions, therfore not all lesions are visible
4.)Nobody has the exact same symptoms as the next person....It is a unique disease like one's fingerprint....
5) Unfortunately, I've learned - Even though you have lesions and black holes, and have a definitive diagnosis of MS - your neuro can pull you off of your DMDs if you have an MRI that doesn't show a new lesion.
6) and maybe most important---If your neuro is ignorant or incompetent enough to deny you treatment or dx because of lack of MRI progression, FIND A NEW AND BETTER NEURO.
COMMUNITY LEADER
7) Neurologists who deny rx of DMD's because of lack of MRI progression are bad for your health because they do not understand MS!
8) Brain stem lesions are often missed by an MRI.
9) MRIs should be done of the brain AND spinal cord.
10) Lesions on the spinal cord are hard to spot.
11) Just because your opthalmologist doesn't see problems with the optic nerve, doesn't mean you don't have ON. Lesions can be behind the eyeball.
12) Don't blow off your symptoms by just saying to yourself "it's probably an MS symptom". You're a human being just like everyone else that can have other diseases and problems. Seek medical advice. Chest pain could be the MS hug, or it could be heart problems.
13) Get a copy of your MRI on CD/DVD and get copies of other medical reports as well. You never know when this will come in handy.
14) One in three people are misdiagnosed (according to Dr. Oz). You know your body. If you are having MS symptoms and have been diagnosed with something else and are questioning that diagnosis, find a different neurologist.
Thanks, Shelly, for starting this thread. It's a good one!
Deb
9) MRIs should be done of the brain AND spinal cord.
10) Lesions on the spinal cord are hard to spot.
11) Just because your opthalmologist doesn't see problems with the optic nerve, doesn't mean you don't have ON. Lesions can be behind the eyeball.
12) Don't blow off your symptoms by just saying to yourself "it's probably an MS symptom". You're a human being just like everyone else that can have other diseases and problems. Seek medical advice. Chest pain could be the MS hug, or it could be heart problems.
13) Get a copy of your MRI on CD/DVD and get copies of other medical reports as well. You never know when this will come in handy.
14) One in three people are misdiagnosed (according to Dr. Oz). You know your body. If you are having MS symptoms and have been diagnosed with something else and are questioning that diagnosis, find a different neurologist.
Thanks, Shelly, for starting this thread. It's a good one!
Deb
15) Not knowing if you have MS when you have years of MS symptoms is frustrating and scary...especially as you watch your body deteriorate without help to stop it or treat the symptoms.
16) Finding a good doctor seems difficult to accomplish.
16) Finding a good doctor seems difficult to accomplish.
17) many people find it difficult to talk about MS but it helps to connect with others who really understand
18) finding out as much as possible about the condition helps you to deal with it
19) male neuros do not seem to understand that women's cycles (and not the peddling kind!) can affect MS symptoms every month. It pumps up the pain, symptoms and the PMS
18) finding out as much as possible about the condition helps you to deal with it
19) male neuros do not seem to understand that women's cycles (and not the peddling kind!) can affect MS symptoms every month. It pumps up the pain, symptoms and the PMS
20) Neuros say ignorant things like "Your male and almost 50. I serious doubt this could be MS."
22) Neuros say ignorant things like "I'd be hard pressed to diagnose someone with MS if they had only spinal lesions and none visible in the brain." (said to me by a researcher with the Accelerated Cure Project at the MS Research Center of New York.)
I have learned that when lesions are present on the spinal cord it is very helpful with the dx because it is rare to find them with any other neuological problems.
I also have learned that about 35% of MS patients present only in the spinal cord.
I also have learned that about 35% of MS patients present only in the spinal cord.
Bob? Lulu? Is that suppose to be "on" the spinal cord or "in"? I truly don't know...
Both I guess. Myelin is on and in the cord. The cord is more like a "bundle" of fibers in the left and right anterior and posterior horns, The ones on the surface seem to show better on MRI than the ones "inside" the horns.
Bob
Bob
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.
I learned (am laughing as I write this) that spinal lesions can be found both in and on the spinal cord....
28) 1.5T MRIs aren't useless; many of us here were diagnosed based MRI findings from the 1.5T machine.
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
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****
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.
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
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!
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)
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