Multiple Sclerosis (MS) - please introduce yourself

Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@lisalucier

Hi, @camper, and welcome to Mayo Clinic Connect. You must be a very caring friend to be standing by her side and looking into this on her behalf.

You may have noticed I moved your post to this existing discussion on multiple sclerosis (MS) so that you can connect with others with similar experiences. Simply click VIEW & REPLY in order to read what others have said.

I'd like to encourage @flowbluelady @disneyfan @ricksraleigh @ydawson @tashanharrell @kcowan16 @sauvee and @kariulrich to offer their support as you seek to help your friend as she waits for the 2nd MRI a month after her 1st to see if the 2 lesions have grown and assess whether she may have MS. They may be able to offer some insights on whether this is good to wait for the next MRI if these are indeed growing.

How is your friend feeling about the waiting period, @camper?

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Thank you for your help Lisa! She is my best friend and twin sister! She is very depressed about it and it is wearing on her.i try to keep her positive! I am very excited to get this feedback! Thank you!

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@camper

Thank you for your help Lisa! She is my best friend and twin sister! She is very depressed about it and it is wearing on her.i try to keep her positive! I am very excited to get this feedback! Thank you!

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How do they test for MS? is it only by Spinal Tap?

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Hi, I am here on behalf of my twin sister. She has not been diagnosed yet. Waiting for a 2-month window to do another MRI, but possible MS. I would like to just Here about experiences with MS to learn more about it. Thank you.

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@camper - your sister is very lucky to have a twin sister like you, out there learning about multiple sclerosis (MS) while she waits for a final diagnosis with her next MRI. Here is some information that may be helpful to you on MS https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269.

I'd like to invite @johnbishop @jenniferhunter and @hopeful33250 to join me in welcoming you, @camper, as you seek some answers on MS, how testing for MS is done, and also as you seek to support her as she is feeling depressed during this waiting period.

@flowbluelady - you'd mentioned your husband has primary progressive MS. How are things going for him?

@lilgrizz - how are things with your MS and the balance issues you were experiencing? Has differentiating between the MS flareups and the lupus flareups become any clearer lately?

@kburgess - last you posted on this thread, you'd mentioned you were not sure if you had MS. Did you get a definitive diagnosis?

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Hello @camper – my wife has a twin sister also and it sounds like you have the same relationship with your twin that my wife has with hers. I don't think a day goes by that they aren't on the phone talking. I agree with @lisalucier that your sister is lucky to have a twin like you wanting to do everything she can to help you. Here is a website for the National MS Society that may provide a lot of information on MS for you:

Guidelines Released by AAN to Help Inform Treatment Choices for Multiple Sclerosis
-- https://www.nationalmssociety.org/About-the-Society/News/Guidelines-Released-by-AAN-to-Help-Inform-Treatmen

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@lisalucier

@camper - your sister is very lucky to have a twin sister like you, out there learning about multiple sclerosis (MS) while she waits for a final diagnosis with her next MRI. Here is some information that may be helpful to you on MS https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269.

I'd like to invite @johnbishop @jenniferhunter and @hopeful33250 to join me in welcoming you, @camper, as you seek some answers on MS, how testing for MS is done, and also as you seek to support her as she is feeling depressed during this waiting period.

@flowbluelady - you'd mentioned your husband has primary progressive MS. How are things going for him?

@lilgrizz - how are things with your MS and the balance issues you were experiencing? Has differentiating between the MS flareups and the lupus flareups become any clearer lately?

@kburgess - last you posted on this thread, you'd mentioned you were not sure if you had MS. Did you get a definitive diagnosis?

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No definite diagnosis yet. waiting for the 2nd MRI to see if the Lesions on the brain have grown.

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@johnbishop

Hello @camper – my wife has a twin sister also and it sounds like you have the same relationship with your twin that my wife has with hers. I don't think a day goes by that they aren't on the phone talking. I agree with @lisalucier that your sister is lucky to have a twin like you wanting to do everything she can to help you. Here is a website for the National MS Society that may provide a lot of information on MS for you:

Guidelines Released by AAN to Help Inform Treatment Choices for Multiple Sclerosis
-- https://www.nationalmssociety.org/About-the-Society/News/Guidelines-Released-by-AAN-to-Help-Inform-Treatmen

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Thank you for the link. I am always on the phone the her too.

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@camper

Thank you for the link. I am always on the phone the her too.

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I am new to Mayo Connect....I have MS. I was diagnosed at age 32...had a large lesion on my cervical spine and was in the hospital for 10 days. Many symptoms, including weakness, loss of dexterity in my hands, the MS hug, fatigue. Took me a year to recover and feel like myself. I was very frightened and not at all certain of my future. I am now 62 and have done well with my MS. I have been on Avonex for almost 20 years. I have some parathesis/numbness in my feet. Recently had an MRI and the lesions in my brain and cervical spine are now smaller. Just wanted to post to let you know MS for some can be benign....I have a few issues, but nothing that stopped me from leading a full and normal life. I was recently diagnosed with degenerative disc disease and have been having debilitating back pain for 8 months. I was always worried about another MS exacerbation sure didn’t expect this. 🙁. But I will take it a day at a time as I did with my MS. I pray your sister does well...even if the diagnosis is MS. God Bless.

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Thank you for sharing your story and for your prayers. That does give me some insight to the MS. I wish you all the best in your recovery. Can I ask how they tested for MS?

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@camper

Thank you for sharing your story and for your prayers. That does give me some insight to the MS. I wish you all the best in your recovery. Can I ask how they tested for MS?

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This was 30 years ago....I had experienced optic neuritis a couple years before my hospital stay, so I believe with having 2 episodes of MS symptoms they suspected it. They did a brain,cervical and thoracic MRI. Also a spinal tap. Not sure they always do that now for diagnosis. Is she seeing a neurologist she has confidence in, and that specializes in MS? I have found that I prefer a neurologist that has much experience with MS. Some do more with Parkinson’s and other neurological conditions. If they specialize in MS, they should be more up on the medications available...there are so many now. Anyone with an MS diagnosis should be on a disease modifying medication. Not sure why she has to wait. Did he give her a reason? No fun having to wait. Our minds always go to the worst scenario...I had myself ending up in a nursing home back then. Hard to not worry...feels like your life is on hold. But, must take it a day at a time...if she is confident with her doctor, great. She can always get a second opinion. That is what I did...actually more like 3 or 4. 😳

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