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Can MS lesions disapper?
Ok.. I was dx 2000 with lesion on brain stem and one on spinal cord along with abnormal evoked testing of optic nerve. LP was normal. I have had several "attacks" having to use IV solumedrol due to fatigue/increase tingling and numbness to legs/cognitive issues. I moved from that state where I was dx and moved into another state and now seeing a new neuro. I had a MRI done since I havent had one done in 2 yrs.. no lesions were seen on brain.. no MRI of spine was done. I have been on Avonex, Betaseron, Copaxone and now am taking Rebif. This doc is saying he doesnt think I have MS nor did I EVER! He is referring me to UCSF in California to a MS center. I quit work in 2003 and been on disability since then. I was told by my last neuro that some lesions if they are not "active" may not appear on MRI's. But I still had MS... what are your thoughts? I am still having symptoms of tingling feet/legs.. fatigue and memory issues. Thank you for your time.
I'll certainly second what Quix says about your new neurologist--run, don't walk, away from this charlatan. It sounds suspiciously like he got his specialty certification out of a CrackerJacks box.(if he has a certification--maybe he just CALLS himself a neurologist!)
But do hang onto that story--after the shock wears off, they might find it kind of funny at the MS center!
Certainly your MRI can change. That's one of the reasons to have it repeated at intervals. Mine was repeated after 6 months. Some lesions had gone away, some new ones had developed. That's sort of how they decided that I had relapsing-remitting, even though my symptioms are rather subtle. And then, after I started on therapy, my next MRI was essentially unchanged. Which said (hopefully) that the therapy is working.
When you go to the MS center, ask them to recommend a neurologist in your neighborhood. That way, if your guy has any friends who think like him, you won't stumble on one. All you need is TWO doctors giving you the same baloney, to get you really confused.
Hang in there! And truly, if you read several research articles that say one thing, and have a doctor who "pooh-pooh's"that, believe that you have a loser.
(Sorry for the diatribe--it's just that I'm a firm believer in evidence-based medicine, and get chills up my spine when I hear "in my experience that's not true...)
The Wreck
But do hang onto that story--after the shock wears off, they might find it kind of funny at the MS center!
Certainly your MRI can change. That's one of the reasons to have it repeated at intervals. Mine was repeated after 6 months. Some lesions had gone away, some new ones had developed. That's sort of how they decided that I had relapsing-remitting, even though my symptioms are rather subtle. And then, after I started on therapy, my next MRI was essentially unchanged. Which said (hopefully) that the therapy is working.
When you go to the MS center, ask them to recommend a neurologist in your neighborhood. That way, if your guy has any friends who think like him, you won't stumble on one. All you need is TWO doctors giving you the same baloney, to get you really confused.
Hang in there! And truly, if you read several research articles that say one thing, and have a doctor who "pooh-pooh's"that, believe that you have a loser.
(Sorry for the diatribe--it's just that I'm a firm believer in evidence-based medicine, and get chills up my spine when I hear "in my experience that's not true...)
The Wreck
Thank you for the welcome. As you prob know, I am new here. Just happened to stumble across this forum looking for answers. I'm glad I found this. Yes, I'm going to UCSF. I was on different meds because.. I started Avonex then found out I was pregnant.. stopped it, then switched to betaseron.. which I loved, but my white blood cell count dropped.. so that was stopped. Started copaxone.. had severe site reactions.. stopped that. On rebif since feb of 2005.. no problems with it. This new neuro Ive seen told me today that he doesnt believe the spinal lesions have much to do with MS!! I asked him.. isnt MS a CNS disease.. and doesnt CNS include spinal cord??? He also said he doesnt believe in starting drug therapy as soon there is a diagnosis of MS.. I gave him my thoughts on that.. and told him that everything I read suggests starting drug therapy to prevent new lesions.. I asked him if maybe these drugs have worked with me.. and show no more lesions.. he said he has NEVER heard such a thing.. and would doubt it. I was so dumbfounded when I left his office.. I do have permanent problems with weakness to legs, fatigue, numbness.. I was just diagnosed with GLAUCOMA this week.. I'm on 38!! ...no high pressure notice, but looks like optic nerve damage... WHAT A WEEK IT HAS BEEN!! Thank you for all your time in responding..
Roxanne
Roxanne
Hi, Welcome to our Forum. What an amazing thing to hear from the new neurologist! Your basic question is a very good one and is asked here over and over again. Can lesions disappear?
ABSOLUTELY THEY CAN DISAPPEAR!! You already got one way that they can disappear, but you misunderstood. Old lesions can be reabsorbed by the body and leave tiny, blank spaces, in the brain. These "black holes" may be invisible to the MRI. It is not common that they are seen until there are so many of them that the entire brain appears to shrink. So you don't often see them reported on MRIs.
The most common thing that happens, and IT HAPPENS ALL THE TIME, is that the body repairs the lesions, by remyelinating the nerves. When this happens the lesions may get smaller in size or even disappear from the MRI altogether. In fact, when they are following someone on therapy, one of the things the look for specifically is whether or not the lesions have reduced in number!!! This is ver improtant for everyone to understand. The studies on the drugs used to treat MS look for a reduction in the number of relapses, a stabilization in the progression of diability and a reduction in brain/spine lesions or, at least, for the number of lesions to stay the same.
It is wonderful that the lesions disappeared on your MRI!! Does this mean that you never had MS to begin with? No, it doesn't. You have had repeated attacks, evidence of Optic Neuritis, and multiple lesions on MRI. Do you have any permanent problems like weakness, spasticity, hyper reflexes, numbness, decreased vision,...anything?
You need to be DONE with this neurologist. However, the MS Center at UCSF is one of the best! It wouldn't hurt to be reevaluated by them. But then, get your follow up by a different neuro close to home. Why were you on all the different meds? Did you have problems on them?
I wrote a little post on how MRI's show MS lesions. I'll find it and bump it up so you can read it if you want. I hope you stay with us so we can help you as you sort all this out.
Quix
ABSOLUTELY THEY CAN DISAPPEAR!! You already got one way that they can disappear, but you misunderstood. Old lesions can be reabsorbed by the body and leave tiny, blank spaces, in the brain. These "black holes" may be invisible to the MRI. It is not common that they are seen until there are so many of them that the entire brain appears to shrink. So you don't often see them reported on MRIs.
The most common thing that happens, and IT HAPPENS ALL THE TIME, is that the body repairs the lesions, by remyelinating the nerves. When this happens the lesions may get smaller in size or even disappear from the MRI altogether. In fact, when they are following someone on therapy, one of the things the look for specifically is whether or not the lesions have reduced in number!!! This is ver improtant for everyone to understand. The studies on the drugs used to treat MS look for a reduction in the number of relapses, a stabilization in the progression of diability and a reduction in brain/spine lesions or, at least, for the number of lesions to stay the same.
It is wonderful that the lesions disappeared on your MRI!! Does this mean that you never had MS to begin with? No, it doesn't. You have had repeated attacks, evidence of Optic Neuritis, and multiple lesions on MRI. Do you have any permanent problems like weakness, spasticity, hyper reflexes, numbness, decreased vision,...anything?
You need to be DONE with this neurologist. However, the MS Center at UCSF is one of the best! It wouldn't hurt to be reevaluated by them. But then, get your follow up by a different neuro close to home. Why were you on all the different meds? Did you have problems on them?
I wrote a little post on how MRI's show MS lesions. I'll find it and bump it up so you can read it if you want. I hope you stay with us so we can help you as you sort all this out.
Quix
I believe the "black holes" will show brain atrophy on your MRI.
It sounds like you have met the criteria for a Dx. I'd be curious to see what new spinal MRIs would show. Did your new neuro say why he didn't order the spinal MRIs???
Are you going to UCSF? I have heard good things from their MS center.
Take care and let us know what you decide! Pat :)
It sounds like you have met the criteria for a Dx. I'd be curious to see what new spinal MRIs would show. Did your new neuro say why he didn't order the spinal MRIs???
Are you going to UCSF? I have heard good things from their MS center.
Take care and let us know what you decide! Pat :)
i have the old reports.. but just found out they destroyed the films from 2000. The black holes shows up though right on the MRI? There were no holes found. Thank you for responding.
Can you get your old MRI's to compare with the new ones? I think that would clear up alot of issues about having or not having MS.
I'll be praying for you,
Carol
I'll be praying for you,
Carol
Yes, they can. They will turn to black holes and over a period of time this will decrease your brain size. I just read that this morning. If you have a whole lot of them and it decreases the brain very much it causes brain damage.
I'll be praying,
Carol
I'll be praying,
Carol
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