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Multiple Sclerosis (MS) - please introduce yourself
Let's talk about living with multiple sclerosis (MS).
Welcome to the support group dedicated to multiple sclerosis to bring all those with this diagnosis or whose loved one has MS — or wondering if they or a loved one has MS — together. This also provides a great opportunity for those who have questions for those who share this diagnosis.
This MS support group is a welcoming, safe place for people to connect and share experiences; ask questions about doctor visits, symptom relief, the diagnostic process and available treatments; and encourage and check in on others in similar situations.
To be part of the MS group, you can:
- Follow the group. Following this group will allow you to receive regular updates in your Connect Daily Digest about group activity.
- Browse the discussion topics. From the group's home page, look through the discussion titles and see where you may have tips or ideas to contribute or a question to ask others.
- Use the group search to find discussions that interest you. If you want to find a specific, MS-related topic, this is the quickest way to see what's available in the group discussions.
- Introduce yourself. Giving a brief background on yourself, when and how you were diagnosed, and what treatments you've had so far will help others in the group get to know you and determine what they might ask you about your MS experiences.
Regardless of where you may be on your journey with MS today, you’re invited to join this group and connect with others.
Why not start by introducing yourself? What has your MS experience or the experience of your loved one been like? What symptoms and treatments have you or your loved one had, and have they helped? Do you have any questions you'd like to ask others who have MS or who've walked alongside someone with the disease?
Grab a cup of tea, iced coffee, or beverage of you choice, and let's chat.
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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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3 ReactionsHow do they test for MS? is it only by Spinal Tap?
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.
@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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1 ReactionHello @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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1 ReactionNo definite diagnosis yet. waiting for the 2nd MRI to see if the Lesions on the brain have grown.
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1 ReactionThank you for the link. I am always on the phone the her too.
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1 ReactionI 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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3 ReactionsThank 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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1 ReactionThis 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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