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Thread: Lesions on the spine for the first time

  1. #1

    Default Lesions on the spine for the first time

    I have had ms for 12 years I have been on and off copaxone I did really well on it for the most part. I am told I need to switch medications. I am scared I have two small lesions that have developed on my spine. What does this mean for my future I need to meet with the doctor reguarding the ones in the brain. Nothing is active at the time. I feel great, I have never had any problems in the last 12 years. My phone call with the nurse did not answer any of my question. I am not sure if they were in the neck or spine area. I was told medications do nothing once the spine is involvled. I am really afraid and not sleeping.

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  3. #2
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by farmwife View Post
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    I have had ms for 12 years I have been on and off copaxone I did really well on it for the most part. I am told I need to switch medications. I am scared I have two small lesions that have developed on my spine. What does this mean for my future I need to meet with the doctor reguarding the ones in the brain. Nothing is active at the time. I feel great, I have never had any problems in the last 12 years. My phone call with the nurse did not answer any of my question. I am not sure if they were in the neck or spine area. I was told medications do nothing once the spine is involvled. I am really afraid and not sleeping.
    Welcome back, farmwife!

    Has a particular drug been suggested for you?

    The usual procedure nowadays is to let the patient continue on whatever drug seems to be working--in your case, Copaxone--but do periodic MRIs to see if there are new lesions or any active lesions. If there are new lesions the patient is advised to change drugs. Maybe Ocrevus has been suggested for you--?

    There's no need to be afraid. I've never heard that "medications do nothing once the spine is involved." What I have heard is that sometimes MS lesions show up on the spinal cord and sometimes they don't. If you were told that spinal lesions mean that no drug will help, I hope you'll check into that some more. I'm almost sure that that is wrong but I'm not a medical doctor.

    And there seems to be no correlation between the types of symptoms you have and the location of those MS lesions showing up on the MRI. So nobody can say what those two new lesions will mean for you.

    Big Science comes along and tells us we have this or that, but we shouldn't let that information dominate our lives. We need to focus on how much we can still do on a typical day, whether we can do the things we'd like to do or have to do, and if/when there's a symptom cropping up, we deal with that as it comes along. With luck, we'll not have too many of those symptoms to deal with.

    I wouldn't worry much at all about those two new lesions. How have you been feeling?

    I can almost guarantee you that you'll feel better if you can catch up on some of the sleep you've lost, and I'm not saying this to put you off. I do believe that though we can't get rid of MS, we can work around it in various ways, and THE most important way is to make absolutely sure we get enough sleep. It works wonders. Eating nutritious food is important too, and so is trying to stay active.

    Let the doctors worry about the lesions if they want to. They probably won't be concerned about them unless you're "presenting" with symptoms so severe that you need to be hospitalized. They will want to put you on a different drug--but if and only if you consent to that. You might not want to take the risk of changing drugs. You might opt to stay on Copaxone. Your doctor shouldn't try to pressure you into taking a different drug.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  5. #3
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    Farmwife, Agate has given you good advice. How are you feeling MS-wise and why was the MRI done?

    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Welcome back, farmwife!

    Has a particular drug been suggested for you?

    The usual procedure nowadays is to let the patient continue on whatever drug seems to be working--in your case, Copaxone--but do periodic MRIs to see if there are new lesions or any active lesions. If there are new lesions the patient is advised to change drugs. Maybe Ocrevus has been suggested for you--?

    There's no need to be afraid. I've never heard that "medications do nothing once the spine is involved." What I have heard is that sometimes MS lesions show up on the spinal cord and sometimes they don't. If you were told that spinal lesions mean that no drug will help, I hope you'll check into that some more. I'm almost sure that that is wrong but I'm not a medical doctor.

    And there seems to be no correlation between the types of symptoms you have and the location of those MS lesions showing up on the MRI. So nobody can say what those two new lesions will mean for you.

    Big Science comes along and tells us we have this or that, but we shouldn't let that information dominate our lives. We need to focus on how much we can still do on a typical day, whether we can do the things we'd like to do or have to do, and if/when there's a symptom cropping up, we deal with that as it comes along. With luck, we'll not have too many of those symptoms to deal with.

    I wouldn't worry much at all about those two new lesions. How have you been feeling?

    I can almost guarantee you that you'll feel better if you can catch up on some of the sleep you've lost, and I'm not saying this to put you off. I do believe that though we can't get rid of MS, we can work around it in various ways, and THE most important way is to make absolutely sure we get enough sleep. It works wonders. Eating nutritious food is important too, and so is trying to stay active.

    Let the doctors worry about the lesions if they want to. They probably won't be concerned about them unless you're "presenting" with symptoms so severe that you need to be hospitalized. They will want to put you on a different drug--but if and only if you consent to that. You might not want to take the risk of changing drugs. You might opt to stay on Copaxone. Your doctor shouldn't try to pressure you into taking a different drug.
    Perfect response from Agate....
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  9. #5
    Distinguished Community Member Sunshine's Avatar
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    Hello farmwife, so glad you came to us for support and information.

    I do not think that its accurate that meds do nothing for the spine. There are so many newer meds since copaxone,

    My first question is “Is your neuro an MS specialist?” If not, get thee to a specialist right away. It makes a huge difference. Trust me. One with good bedside manner doesnt hurt either.

    You maycontinue to have no symptoms despite the increase in lesions. This was the case for me and many patients...

    Please try to stay in the moment. Right now you are traumatized by this information, so your mind keeps racing to the “what ifs” of the future. Its a normal response to stress that you can short circuit. The first thing to try, is when you catch yourself saying, “What if”, replace it with , “So what?if it happens, the future always takes care of itself, and most of my what ifs don’t come true”.

    There are more strategies I can share with you if you are interested. Very effective ones. I have walked the walk many times with new traumas with Multiple Sclerosis and Stiff Person Syndrome.

    These other strategies are very powerful, and I will share them with you if you want. They are time consuming to type, but am happy to do so, if you want to learn more.

    We are thinking of you and waiting....

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    Farmwife, welcome back to BT. I can somewhat relate to what you are saying. I did not get an early diagnosis and when I finally did after many years my medical records showed that I had had MS for at least 25 years. This was 20 years ago, so that makes 45 years at least that I have had MS. The main lesion that I had is on the upper part of my cervical spine. I was put on an interferon immediately. That and Copaxone were the only things available back then. I have remained on the interferon all these many years. I would like to have a newer drug but my Doctor has said that would not be a good idea for me. At my age now they would all be risky.

    I was told about what you have heard about where the lesion is located. However, while I have problems, I am still doing about as well as most people my age are and better than many. I am still walking enough to do housework, drive, go to the grocery store and do my own errands. I have recently started trying to do more exercise than I had been doing. I do the things that I can for myself, but I cannot change where that large lesion is located so I have learned to live with it and I have come to realize through talking to others that many people who have more brain lesions are not doing as well as I am. This is a disease where you never know.

    I hope you continue to have a mild course with your disease. By the way, during the at least 25 years that I had MS before diagnoses I continued to work and live a normal life. With the newer drugs it is likely you will have much longer.
    Virginia

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  13. #7

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    Thank you to all for helping calm me down.
    I feel real good then I read the report from my doctor my lesion in the left frontal lobe is the one causing me to have difficulty speaking, they wrote suggesting cavitation. I googled it now I am really terrified. As far as going on Aubagio or Ocrevus I am not thrilled about either of those and feel copaxone is still my drug of choice.
    I just switched doctors and have one who specialized in Ms . My other doctor never would really tell me where the lesions were and gave me not suggestions on vitamins take or diet to follow this one seems to be on top of things. I do not see her until march because she does travel around.

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    Quote Originally Posted by farmwife View Post
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    Thank you to all for helping calm me down.
    I feel real good then I read the report from my doctor my lesion in the left frontal lobe is the one causing me to have difficulty speaking, they wrote suggesting cavitation. I googled it now I am really terrified. As far as going on Aubagio or Ocrevus I am not thrilled about either of those and feel copaxone is still my drug of choice.
    I just switched doctors and have one who specialized in Ms . My other doctor never would really tell me where the lesions were and gave me not suggestions on vitamins take or diet to follow this one seems to be on top of things. I do not see her until march because she does travel around.
    I don't know anything about MS but I do know the left side of the brain is considered to be the side that controls speech. Speech is a complicated function because you have to process it to understand and respond and then be physically able to move the mouth. If you have damage in motor areas physical ability to speak is effected at times. I saw your new thread and glad you are happy with the new doc.
    Last edited by funnylegs4; 12-14-2019 at 12:48 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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