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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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I am SMD52 and I was diagnosed with MS 32 years ago at 40. I’m interested in people who are aging with MS. It started as RR and progressed. I tried several meds, but primarily used Avonex for 20 years. I am off of disease modifiers now but I wonder if I developed small vessel disease from it. (Stroke/TIA) I have blood issues that preclude disease modifiers now, so it’s symptom management! Despite being told my condition had “burned out” , I still have flares and relapses and now use a rollator. I have other conditions such as deafness, that I won’t bore you with, but I live a quiet life. I had covid last year and I’d done everything possible to avoid it after a booster. After that, I’ve had unrelenting vertigo and vision issues. Just old and still plodding along and it’s isolating. 🙁 Lots of meditation and quiet time helps…my best to you all.
@davidg17 - this sounds for sure like something to report to your doctor or even the patient experience group, if there is one at your facility.
I have played guitar all of my life (I'm 58) and even with PPMS for 20 years I've been able to play by using ergonomic devices and playing light instruments. Then, first week of March I had a new, bad lesion and after months of physical therapy the only thing that has not made progress is my left hand. The pointer finger wants to claw up and lock, the others all want to freeze and I can't stretch between fingers. Is there a medical procedure that will help? Will botox injections help? I heard they weaken the muscles and my left hand is already too weak to open a soda can.
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2 ReactionsHi my name is Debbie or Debs. I was diagnosed in October last year. I have had all the tests and bloodwork done. I hardly have any issues except I struggle to walk and have had one episode of my left eye closing I am very lucky with my team but I lost my job because of memory and cognitive issues causing problems. I gave been paid out my disability which I used some of to pay hospital bills not covered by my medical aid or my Gap cover. I can hardly get out of bed and when I do my physics exercises I have to sit down often as my breathing is compromised as well as my heart. I think my treatment is helping. I am with all of you all the way
Debs
Hi I can't see the medication you are on
Debs
@amusician - welcome to Connect. That must be frustrating having your left hand not working like it used to.
What did the physical therapist say about the lack of progress in your left hand, amusician?
Hi @deborah09h - welcome to Mayo Clinic Connect.
Glad you have a diagnosis, so you know what's going on. Good to hear your disability is covering gaps that other coverage is not.
You mentioned some breathing compromise. Do you mean shortness of breath? What treatment are you on that you think is working for you?