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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?
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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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2 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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1 ReactionHave 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.
Good 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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1 ReactionI 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?