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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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Good luck!!
@vivib Do you live close to a big city and/or University Medical Center? I've had my best care at these hospitals.
@legalese1972. I have a condition similar to MS, but it’s not. The MRI shows lesions just like MS (which I’m too old for). It’s called CLIPPERS—Chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. Needed a good neurologist to figure it out! Too many diseases!
@vivib no one should have to wait that long! It’s not as though the doctor is paying for the MRI! When you see the doctors, just tell them that you’ll sit there until they give you the prescription! Talked to a friend tonight who did just that. Good luck—were all cheering for you!
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2 ReactionsToday's member spotlight features @becsbuddy, who many of you have met through this discussion and other Connect groups. Read her interview with fellow member John to learn more about her, including her love of the outdoors and quilting.
Great opportunities are heavy burdens: meet @becsbuddy https://connect.mayoclinic.org/page/about-connect/newsfeed-post/great-opportunities-are-heavy-burdens-meet-becsbuddy/. Please take a look and make a comment.
Member Spotlights are published the 2nd and 4th Friday every month. Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/
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1 ReactionHi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.
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2 ReactionsHi, @grammadoro - sounds like you've had a many-years-long path with MS. What symptoms are you experiencing from your disease?
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1 ReactionI’m currently mostly wheelchair bound, but can transfer by myself. I use a transfer board to get onto a shower chair, although I used to be able to use my walker and just step over the edge of the tub, sit on the seat and drag my right leg over. I’ve had some bouts of illness, I’m very susceptible to pneumonia. It’s tough to get back into walking when you’v been sitting so much. I’m doing exercises and plan to start physical therapy again next week. My goal is to be able to walk with my walker again to gain some independence. My husband is also in a wheelchair, but he has been a paraplegic since 1978. He gets my travel chair in and out of the van using a hoist. He is currently my caregiver.
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1 Reaction@grammadoro I, too, use the CBD oil. I get it from Bluebird Botanicals. They do everything online. Just google them. I found them thru a nurse who had worked with MDs in a medical marijuana clinic. I’m afraid I can’t give you ideas of how much to use because everyone is so different. The company may have suggestions. Let me know if you’re successful! Becky
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1 ReactionMany of you have shared some of your story here with multiple sclerosis (MS). I wanted to check in and see how things are going, and thought your responses would be beneficial to all the members in this discussion.
@srountree3006 - did you get the MRI you were hoping for?
@legalese1972 - how are your symptoms? Are you still feeling as though you are just trying to survive?
@bumble81 - were you able to get back to your old neurologist's office to see if they will order the MRI's and investigate the increased protein in your spinal fluid?
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