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  • disappearing brain lesions

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    Old 01-14-2011, 10:11 AM   #1
    18wife
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    Question disappearing brain lesions

    My husband's neurologist would not confirm the MS he was suspicious of from brain lesions because the spinal tap was negative. Dr recomended another MRI to confirm, but in that MRI the lesions were gone as viewed by the radiologist and the neuro. Neuro says that is ABSOLUTELY IMPOSSIBLE & ordered a repeat of the MRI w & w/o contrast (same as last one) with 3 mm slices instead of 5mm. Have not been able to follow up with neuro yet, but very worried about what the new MRI showed, until I saw a discussion posted on this website from 2008. In that discussion someone said it was possible for lesions to 'disappear' on MRI as they become 'black holes'. I was relieved to read that, but very concerned because my husband's symptoms have not gotten any better. I think there should be some change if the lesions are not active, right?

    Just a little history: My husband began symptoms 9 years ago and has gone through countless diagnosis from fibromyalgia, depression, ALS and Lyme all being ruled out by one doc or another. We have visited rheumatologists, GP, fibro specialist, allergy specialist, several neurologists all with no absolute diagnosis or treatment. He's tried a grocery bag full of supplements, pain meds that don't take away the pain, IV steroids & IV supplements all to no avail. I think we are both coming to the end of our ropes.

    Thank you for any advise you can give,
    Devoted wife of 18 years

     
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    Old 01-14-2011, 10:32 AM   #2
    MSJayhawk
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    Re: disappearing brain lesions

    Welcome. MS Lesions do not disappear- they become "black holes". If your husband's initial MRI was askew, it could have been misread. 15% of MSers who have had LP's have negative results. If the negative LP is the obstacle to your husband's neurologist decision to fish or cut bait, I would likely shop for a new neurologist. Make sure the neurologist specializes in MS. As you are in Texas, you should be able to find an excellent neuro. DFW/Austin/Tyler/Houston all have excellent neuros. If you live in another location, check with your local MS association or society for a referral. I would skip the supplements for now. As for pain, for me, it is something I have learned to live with each day. Depending on the pain location, I have my own treatment which helps me.
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    Old 01-14-2011, 11:07 AM   #3
    Snoopy61
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    Re: disappearing brain lesions

    Hello 18wife,

    Multiple (many) Sclerosis (scars).

    Lesions (scars) can disapppear.

    Black holes indicates permanent damage in that area. The more lesions you have the more black holes you could possibly have which leads to brain atrophy.

    If your husbands lesions became black holes they will show on the MRI.

    The brain can re-route around the black holes but only to a point. Too many black holes and the brain no longer has a way to re-route.

    The problem with your husbands situation in regards to MS: Lesions are part of the disease process. If your husband shows no lesions then his MS diagnosis becomes iffy. The longer he goes without lesions and with a negative LP the more it DOESN'T look like MS.

    Has your husband had a MRI of the Cervical Spinal Cord? Lesions can and do show up there.

    Last edited by Snoopy61; 01-14-2011 at 01:36 PM.

     
    Old 01-14-2011, 03:09 PM   #4
    JodiH
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    Re: disappearing brain lesions

    One of my lesions showed up on one machine but not another. Be sure both MRI"s are being done on the same strength machine--mine were not thus explaining (hopefully or perhaps another popped up on the interim). If you have an active lesion and it is no longer active, you will and can still have the symptoms if it left residual damage. I do have an MS friend who has had MS for years and his number of lesions have decreased without moving into black holes. All in all, I think your situation is good!

     
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    Old 01-14-2011, 07:25 PM   #5
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    Re: disappearing brain lesions

    Hi there. I may actually be the person who you read about with black holes...if so, sorry I scared you.
    When I was dx, I was "fine" except for my initial onset symtom, neuropathy in my hand and fingers...a MRi showed over 50 lesions- which led to my dx...by the way, my Spinal Tap was negative too.

    So many of my lesions were in the same area, that eventually the brain tissue could no longer support them....black holes appeared. I have to disagree with one thing which another poster said, it doesnt ALWAYS happen and it doesnt ALWAYS lead to brain atrophy. This, from my MS specialist and my Neruo...

    Im getting my PhD as we speak. I also have 3 children and work 50 hours a week as an executive. I can honestly say Ive had no loss of cognitive function or anything else in the past 5 years. Im 44 years old. Im on Rebif, which has kept me stable. No new lesions, no new symtoms- of course I still have a completely numb hand and fingers...that never went away.

    My best advice to you. find a new Neuro IMMMEDIATELY. Perferable a MS specialist, because they can not only dx MS, but rule it out and point you to the right direction if they agree it isnt MS....dont wait.

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    Old 01-15-2011, 02:32 AM   #6
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    Re: disappearing brain lesions

    I just recently watched the National MS Society Webcast...the panel of doctors tried to answer this question. (In fact the webcast should be on their website) One of the experts explain that it is possible as the inflammation resides that the lesion is no longer detectible by our current technology. It may still be there, just not being detected by the decrease in size as the initial inflammation/flare up lessens. Meaning the symptoms may still be there without visible evidence. Just wanted to add an opinion. I would take Nikki's advice and seek another MS Specialist opinion.

     
    Old 01-15-2011, 02:28 PM   #7
    kimpossible67
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    Re: disappearing brain lesions

    I don't know if this helps or not but my spinal tap was negative, too. I was dx'd by my MRI's, VEP's and assorted other tests. My mri's say the lesions are still there, just are/are not active.

    RRMS going on four years

     
    Old 05-04-2011, 11:19 AM   #8
    Leo81
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    Re: disappearing brain lesions

    I too am going through exactly what 18wife's husband is going through. After 2 visits to 2 different neurologists in 2 different states, I have no diagnosis of MS or for that matter, anything else. My latest visit to a neurologist this past week after looking over my MRI's CT's and EP tests and a negative LP last November 2010 says he can't give me any diagnosis because then "they" may only target that particular disease and not look at others.
    So..no diagnosis. In October of last year I was having horrible gait problems along with heaviness in my hands and burning in my limbs. I was tired all the time and very "dizzy". (Severe vertigo symptoms). My GP doctor ordered a CT of the brain. One lesion. Ok. He ordered an MRI, it found 3 lesions in total. Ok. Now they say they are gone. In the mean while I fell into another relapse or flare-up. My legs gave out completely and I kept falling. Memory loss was happening again, the vertigo, the chronic pain in my back and legs.
    I went to our Er and the doc on call did another CT and said he saw 1 "new" lesion. Now we are at 4...right? I am slowly coming out of this flare-up now and it's been 7 weeks. I still use my cane and the pain is calmed by the Valium they gave me in ER for the muscle spasms in my legs I have at rest. They say the lesions are not there now. What should I do now?

     
    Old 05-04-2011, 12:12 PM   #9
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    Re: disappearing brain lesions

    Welcome Leo81, A CT Scan would not locate lesions due to their extremely small size. Lesions which have removed myelin sheath will scar over. These old lesions will be visible with an MRI.

    You need to be seen by a neurologist who specializes in MS. If your current doctors are leaving you in Limbo, seek another opinion so that you can reach a diagnosis and get back to your life. The right neurologist makes a world of difference.
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    Last edited by MSJayhawk; 05-04-2011 at 12:14 PM. Reason: typo

     
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