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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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Hi @teresasangel - thanks for introducing yourself and talking a bit about your situation with MS. You mentioned treatment with ofatumumab (Kesimpta). How has that gone, giving yourself injections? Have you felt this therapy has been effective for you?
Hi @jakedduck1 - I did not realize you were being evaluated for possible MS or muscular dystrophy. You have a lot to sort out with dealing with multiple illnesses and trying to figure out if the symptoms of numbness, balance and weakness in your legs are for sure from neuropathy, the language issues are for sure from the epilepsy medications, and the dark spot on your brain is from a stroke at a young age, instead of any of these having a relationship to MS.
I trust that the doctor at Stanford will sort all this out for you. Perhaps in the meantime, some of those in this discussion with a history of MS such as @recruiterbreedm @wahoochar @msr2323 @travel4fun and others will also have some thoughts on these symptoms and possible relationship to MS. Hoping they also can provide some input on whether frequent falling is a first symptom of MS.
Have you experienced minor or major injury with these falls you mentioned, jakedduck1?
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1 Reaction@lisalucier
I've had a few shoulder surgeries and l many dislocated shoulder reductions but I guess that's par for the course with epilepsy.
I would've thought that if I had a neuromuscular disease, I would've shown more symptoms by now but I don't really know anything about those types of diseases. I'm convinced my falling id seizure and neuropathy related but I appreciate my new doctor wanting to check things out. My appointment at Stanford isn't for 6 months.
Take care,
Jake
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2 ReactionsIt must be frustrating to wait for so long to see a doctor. My early symptoms were vertigo (increasing in severity until I drove off a country road into a ditch) and falls. An ENT doc put me on the path to MS diagnosis almost 40 years ago. Now age 78, with 6 diagnosed concussions/hospitalizations, 2 strokes, additional diseases including sarcoidosis I struggle to self-diagnose whether MS, concussions , strokes and/or aging causes specific on-going symptoms. Recently moved to Texas and Medicare mess keeps me from getting medical care, although I’ve used Medicare in Calif, Maryland, Kentucky and Arkansas, but can’t get help in Texas. Life certainly provides no end to surprises. I wish you all the best.
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2 ReactionsHi, my name is Teresa. I have advanced dentist or PPMS which is now advanced. I'm getting comfort care now. I'm confined to a wheelchair right now. My body is on fire. My hands are hard to move. I'm going to. I'm going to a pain doctor on 22 April in two days they're gonna have to have my pain meds again because my pain meds aren't working my bones hurt. I have a rash on my on my body. My left leg is I can't feel it does anyone else feel this way? Or worse