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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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At the top of the MS page there are page numbers in boxes. This page is 32 and if you click on that it will take you to these posts even if the current page is beyond it.
I look forward to hearing from you and hope your treatment works.
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2 ReactionsI will ask my neurologist at my next appt what the correlation is between both. He only sees MS patients so I think he will know. My appt isn't until Apr 29 though. If your neurologist isn't familiar with Botox you should see a pain medicine specialist - they are the doctors who administer Botox.
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1 ReactionHi I'm Charlene (wahoochar)
I was diagnosed with MS at age 24' I am now 70.
It has been a wild ride, lots of relapses, but usually recovered pretty well.
I'm curious if anyone has tested positive for antibodies of John Cunningham's virus.
I have very little knowledge and not sure what it means for future.
Thank you!!!!
God Bless you all.
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3 ReactionsWelcome @wahoochar, The unknown can be a little scary sometimes. @colleenyoung posted some information about the John Cunningham virus or JC virus earlier in the discussion that might be helpful for learning more. Here is a link to her post - https://connect.mayoclinic.org/comment/118351/.
Have you tested positive for the John Cunningham virus?
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2 ReactionsOne of Your docs need to trade some chips to get you in to the neurologist asap. I would call all of their offices and tell them you’re 10 minutes away and can you get on the cancellation list - that your other docs (primary Rheumy etc) all want you to see a Neuro and you really need a diagnosis so you can pursue some kind of treatment.
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2 ReactionsHave you tried Lyrica or Botox yet? I still plan on asking my neurologist about Lyme disease but my appt has been moved to Jun 4. He has a lot of speaking engagements so this happens almost every other appt. I hope you're doing well.
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1 ReactionGood evening all,
I’m a 44-year old black woman residing in Minnesota. I was diagnosed with relapsing/remitting MS. I was initially diagnosed in 2020 with minimal symptoms however in October 2024 I had a severe flare up. I was hospitalized several times with nausea, dizziness, loss of vision, and unable to walk without a walker. I found myself at the Mayo Clinic in January 2025. They discovered another active lesion on my brain and I received a plasma exchange. I’m going to start taking Ocrevus in the next couple of weeks. I was previously on Aubagio. I am not back to myself and it’s frustrating. Looking forward to connecting with others.
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2 ReactionsI have an unusual late onset of Tumefactive MS at 65 yrs old. I have 5 brain lesions and 1 in cervical area. Mostly it's like having had a stroke and diminished the function of my whole left side. Also some problems processing language. Does anyone else deal with this type?
Hi, I am my name is Teresa. I have advanced MS I'm confined to a wheelchair. I can no longer walk. My whole left side is numb. My arms are getting weaker and my right side is starting to get affected my hands. They hurt really really bad and my hands. They get real stiff and it's hard to close them. Sometimes I'mk on kensempta I take that once a month I am able to transfer to my wheelchair. I do have a subpubic catheter cause I am incontinent.
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1 ReactionMy doctor is referring me to Stanford to check and see if I might have Muscular Dystrophy or Multiple Sclerosis. He's concerned about how often I fall. I told him I thought my falling is related to my seizure medication and my neuropathy.
He wasn't impressed with my diagnosis and I wasn't impressed with his. So I go to Stanford in October, we'll see what happens.
My right knee gives out sometimes but I believe that to be an arthritis problem. Is frequent falling a first symptom? I have numbness, balance and weaknessin in my legs from my 40 year battle with neuropathy and lack of use, at least that's what I think it is. I do have language issues but I feel that too is a seizure medication side effect. I've been on seizure meds for 60 years. I also have a dark spot on my brain. Some neurologist believe I had a stroke at a young age and others don't know what caused it.. No one ever said it was a lesion, though.
I am 73 years old.
All information appreciated.
Take care,
Jake