Aa
It's not the amount of lesions...
Hey all,
I went to the Neurologist (a new Neuro and an absolutely great one. One that was compassionate and caring and dern it....listened) yesterday and this is what I was told, that I did NOT know. It is not about how many lesions they see on MRI. It is about the amount of brain atrophy. She said that long before lesions appear, the medical community feels that the axions (axons) in the brain are transversed. Cut in half. Myelin damage long before any lesions are detectable on MRI.
She said this is when the damage from MS starts to occur. She said that what they worry about is the skrinking of the brain tissue. (atrophy) She said this is why it is so vitally important to get one on of the injectable or IV medications very early on, in the disease process.
I am going to do some research on this today and will post what I find out, for those who would like to know.
She was very upset that I have now been so many years without any treatment for the MS, but only for the symptoms. I discussed with her the people on this forum who absolutely feel that they have MS, some have lesions, some don't...she was appalled. She said that if a person already has lesions and they have had all other testing to rule out other disorders, that the patient should push to find another doctor, who will treat them and SOON; if the one they presently have, will not diagnose them with something. She said that the criteria for MS is clear. If a patient meets that criteria, then they should be on preventive therapy as soon as possible. Waiting, is allowing any brain atrophy to progress. She said that this is irreversible.
She said that it can progress to the point where one day, you may wake up blind in one eye or unable to walk without assistance. Just to name a couple of things. It's not worth the risk.
She also told me that person that presents with spinal lesions and very little "sensory symptoms" do not have a good prognosis for the future. Spinal lesions tend to affect the body in debilitating ways. If you present with mostly sensory symptoms and remain that way, this bodes for a more positive outlook for the long term. She said that damage is being done to our myelin whether we are in an attack or not. The axons or axions in the brain are being damaged. As I said, I have to do some more research.
I was crying so hard during my appointment, that I didn't hear everything and take in everything. It's only because I took the love of my life with me, that I remember anything about the appointment.
As some of you may remember, I had a Neuro that took away my MS diagnosis for almost 3 years. That man prevented me from getting the vital treatment for MS that I should have been on. Now the Neuro's from the Medical Center where I went for 8 years, allowed me to be without treatment for 5 of those 8 years. Knowing of the damage that was being done in my brain, for everyday that I was not treated.
I guess the whole point of my post, is not for sympathy, but to stress with every breath left in my body, to FIGHT for answers, if you are not getting them. Fight with everything that is within you, so that if you DO have MS, that you are treated appropriately and NOW...before any further damage occurs in your brain. Once our brains start to atrophy, this is brain tissue that is gone forever.
Heather
I went to the Neurologist (a new Neuro and an absolutely great one. One that was compassionate and caring and dern it....listened) yesterday and this is what I was told, that I did NOT know. It is not about how many lesions they see on MRI. It is about the amount of brain atrophy. She said that long before lesions appear, the medical community feels that the axions (axons) in the brain are transversed. Cut in half. Myelin damage long before any lesions are detectable on MRI.
She said this is when the damage from MS starts to occur. She said that what they worry about is the skrinking of the brain tissue. (atrophy) She said this is why it is so vitally important to get one on of the injectable or IV medications very early on, in the disease process.
I am going to do some research on this today and will post what I find out, for those who would like to know.
She was very upset that I have now been so many years without any treatment for the MS, but only for the symptoms. I discussed with her the people on this forum who absolutely feel that they have MS, some have lesions, some don't...she was appalled. She said that if a person already has lesions and they have had all other testing to rule out other disorders, that the patient should push to find another doctor, who will treat them and SOON; if the one they presently have, will not diagnose them with something. She said that the criteria for MS is clear. If a patient meets that criteria, then they should be on preventive therapy as soon as possible. Waiting, is allowing any brain atrophy to progress. She said that this is irreversible.
She said that it can progress to the point where one day, you may wake up blind in one eye or unable to walk without assistance. Just to name a couple of things. It's not worth the risk.
She also told me that person that presents with spinal lesions and very little "sensory symptoms" do not have a good prognosis for the future. Spinal lesions tend to affect the body in debilitating ways. If you present with mostly sensory symptoms and remain that way, this bodes for a more positive outlook for the long term. She said that damage is being done to our myelin whether we are in an attack or not. The axons or axions in the brain are being damaged. As I said, I have to do some more research.
I was crying so hard during my appointment, that I didn't hear everything and take in everything. It's only because I took the love of my life with me, that I remember anything about the appointment.
As some of you may remember, I had a Neuro that took away my MS diagnosis for almost 3 years. That man prevented me from getting the vital treatment for MS that I should have been on. Now the Neuro's from the Medical Center where I went for 8 years, allowed me to be without treatment for 5 of those 8 years. Knowing of the damage that was being done in my brain, for everyday that I was not treated.
I guess the whole point of my post, is not for sympathy, but to stress with every breath left in my body, to FIGHT for answers, if you are not getting them. Fight with everything that is within you, so that if you DO have MS, that you are treated appropriately and NOW...before any further damage occurs in your brain. Once our brains start to atrophy, this is brain tissue that is gone forever.
Heather
So I have visable brain atrophy and postivie VER and my neur just let me go. He said there is nothing wrong with me...I am 45 and had ON in 2009 with left over vision loss. I felt like giving up but should I fight on? I have not been able to leave the house is 28 days due to the heat. Thanks Mary
This makes me feel better. I have cognitive difficulties, which are invisible but a cause of great difficulty in my life. I went from a high-functioning senior manager to a person who can not conduct her own life - even with assistive technological aids
Yeah, they keep throwing that McDonald criteria in your face. They say "Oh you have 8 T2 lesions Not 9 lesions, sorry you Don't have MS". Bullchit!
To Cjacks ..thanks for bumping this up!
Great info! This especially hits home as the wacky neuro-otologist tries to take away my dx. Ain't no way in h*ll that's going to happen just because I don't have enough lesions, especially after reading this. I'll stick my neuro who has been absolutely amazing for me.
Ren
Great info! This especially hits home as the wacky neuro-otologist tries to take away my dx. Ain't no way in h*ll that's going to happen just because I don't have enough lesions, especially after reading this. I'll stick my neuro who has been absolutely amazing for me.
Ren
doesn't look like the VA neuro's see eye to eye with your doctor's thoughts! though most on this list know why they do not -- money based medical rationing plain and simple.
though they did get back on the "we need to start you on a DMD to err on the side of caution" treadmill recently. we'll see ...
interesting reading Heather, a good read
though they did get back on the "we need to start you on a DMD to err on the side of caution" treadmill recently. we'll see ...
interesting reading Heather, a good read
Glad to hear about your good news Heather. Good reading, good information Heather and all.
Bob :)
Bob :)
Awsome info here,
It seems to me after reading all this, that this thread gives new meanning
to the phrase
MS IS ALWAYS ACTIVE!!!
I know we always knew that or always say it, But reading this thread really brings
it home.
So glad I did not miss this post. Thank you all for your contributions
Warkitten 2008
It seems to me after reading all this, that this thread gives new meanning
to the phrase
MS IS ALWAYS ACTIVE!!!
I know we always knew that or always say it, But reading this thread really brings
it home.
So glad I did not miss this post. Thank you all for your contributions
Warkitten 2008
You can ask the neurologist, or ask the imaging clinic and they'll send a copy to your home address. Typically they won't do it until the neurologist has gone over your report first.
Thanks, that's reassuring. I haven't seen the radiologist's report for any of my MRIs. Is that a loaded question, to ask the neurologist for it?
Heather, this is great - I have never read it. I dont know how I missed it! Thanks and I do think it ought to go in the health pages also! Lynette
No, I think that the neuro's estimate is probably all right. The radiologist will comment if the virchow-robin spaces, or the ventricles, are larger than normal. I would trust the radiologist's opinion over the neuro when it comes to reading MRIs anyway.
bump and a comment.
Hmm, when my neuro was looking at my MRI (shortly after she gasped and said "Oh dear") I asked if there was atrophy. I hadn't read this thread, but I think Quixotic did mention atrophy in her MRI info. The Dr looked, pointed out that my ventricles are fairly small and that there's not a lot of room between cortex and skull, and said that no, atrophy doesn't appear to be a problem. Then she asked why I had asked that. I said I'd been reading about MS and just wondered.
From Heather's post, it sounds as if this casual check wasn't up to standards. I'd like to ask her to do a pixel count but am very wary of damaging our Dr/Pt relationship before I get a Dx. Any advice?
Hmm, when my neuro was looking at my MRI (shortly after she gasped and said "Oh dear") I asked if there was atrophy. I hadn't read this thread, but I think Quixotic did mention atrophy in her MRI info. The Dr looked, pointed out that my ventricles are fairly small and that there's not a lot of room between cortex and skull, and said that no, atrophy doesn't appear to be a problem. Then she asked why I had asked that. I said I'd been reading about MS and just wondered.
From Heather's post, it sounds as if this casual check wasn't up to standards. I'd like to ask her to do a pixel count but am very wary of damaging our Dr/Pt relationship before I get a Dx. Any advice?
Thank you for sharing this information with us. I am so thrilled that you now have a Dr who is willing to help you get the disease modifying drugs that can help you. I am so thrilled that you have a caring neuro (see they are out there) we just have to find them.
Also for those that are not diagnosed it is a good reason to keep searching for the answers so that if it is indeed MS you can get on the disease modifying drugs early.
This whole thread was very enlightening, there is always so much to learn from each others experiences.
Thank you Heather for sharing this with us and everybody else for their imput.
Cheers,
Udkas.
Also for those that are not diagnosed it is a good reason to keep searching for the answers so that if it is indeed MS you can get on the disease modifying drugs early.
This whole thread was very enlightening, there is always so much to learn from each others experiences.
Thank you Heather for sharing this with us and everybody else for their imput.
Cheers,
Udkas.
Wow! it was slow with other posts today and I happened across this discussion. There is so much in herer I will have to read it again and again. Thanks Jensequitir for bringing it forward from the archives. - Lulu
Guys, I don't know how many of you receive the MSQR newsletter, but mine came in the mail yesterday. There's a dry, boring, scholarly article about diagnosing MS, and it talks about the new research with axon severing happening long before lesion formation.
But the article ends with the theory that new higher-Tesla MRI machines will solve all our diagnostic problems. I was a little irked. Would a super-dooper MRI be able to pick up axon breakage?
But the article ends with the theory that new higher-Tesla MRI machines will solve all our diagnostic problems. I was a little irked. Would a super-dooper MRI be able to pick up axon breakage?
WOW! I've never seen this either!
I was reading it, and reading it, thinking now I know Heather is on Copax - what the? I'm confused! And finally, I noticed the date!
What a write up! Can we organize this into a health page somehow? Want me to help?
I'd be glad to.
Belated Thanks Heather, this Dr. gal is an angel, how far from here to your place honey? Can we meet up for an appt. and lunch? and dinner? Don't get me wrong, I have a Neuro, but would like to not have to take out my crowbar at every appt to get into the important stuff!
xoxo
Shell
I was reading it, and reading it, thinking now I know Heather is on Copax - what the? I'm confused! And finally, I noticed the date!
What a write up! Can we organize this into a health page somehow? Want me to help?
I'd be glad to.
Belated Thanks Heather, this Dr. gal is an angel, how far from here to your place honey? Can we meet up for an appt. and lunch? and dinner? Don't get me wrong, I have a Neuro, but would like to not have to take out my crowbar at every appt to get into the important stuff!
xoxo
Shell
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