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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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Had my 3 MRI's today and it took 2 hours. Laying on that hard table really hurt me and I came home and rested for awhile. I am still getting fatigued a lot and I did laundry on Thursday and got my hair cut and went shopping on Friday and afterwards I had to rest. It seems like I can only do 1thing and I get tired. I know the Ocrevus is working because my legs are better but some areas that were fine now have problems. I hope the infusions are not too far apart and my legs start to get worse.
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2 ReactionsHello @disneyfan
It is so good of you to keep us updated. I'm glad that you are noticing relief with your infusions of Ocrevus. All of us, with chronic illnesses, especially those of a neurological origin, have to pace ourselves and not do too much in one day and not too many things for multiple days in a row. I hope that you continue to find relief and also find a balance with activities and rest!
If you are comfortable doing so, could you let us know if your MRI shows any improvements?
Teresa
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1 ReactionHello @disneyfan
I read an article today in an email that I receive from MS News Today and I thought it might interest you, it is about how European doctors are considering a new MS drug in addition to Ocrevus. Here is the link to the article, https://multiplesclerosisnewstoday.com/2017/11/28/survey-shows-european-neurologists-ready-to-use-ms-therapies-mavenclad-and-ocrevus/
The last time you posted you mentioned having several MRIs as well as lab work. I hope that the results were positive. Are your legs still feeling better with the MS treatment? In your last post you mentioned increased stamina and strength. I hope that is still the case.
We look forward to hearing from you.
Teresa
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2 ReactionsMy 69 yr old husband has primary progressive MS. The majority of his lesions are in the brain which is causing some Parkinson's symptoms in addition to some really strange sensations in his head. Examples:. Feeling like water is sloshing in his head, feeling like water bullets are firing in his head and eyes. His neurologists do not see to understand how he is tortured by these sensations. The gabapentin he takes does not help. Are any members or someone you know experiencing anything similar?
Hello @flowbluelady, welcome to Mayo Clinic Connect. I did find a couple of other links that may describe some of the symptoms your husband is having that are associated with MS.
NIH - Paroxysmal symptoms in multiple sclerosis masquerading as transient ischaemic attacks
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029382/
MS Focus Magazine - Coping with Paroxysmal Symptoms
-- https://msfocusmagazine.org/Magazine/Magazine-Items/Coping-with-Paroxysmal-Symptoms
Have you mentioned to the doctors that the gabapentin is not helping?
John
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1 Reaction@johnbishop
Thank you for the links. I will check them out. This is my first attempt at connecting with an online group. I look forward to connecting with others who migjt can provide helpful info.
Yes, the doctors know the gabapentin is not helping the symptoms I mentioned. They have played around with his dosage to see if it does. However, he continues to take it because it does help with other symptoms. His next appt is next month, and we will address it again.
Thanks again for your info.
Betty
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2 Reactions@colleenyoung ,
My 69 yr old husband has primary progressive MS with most of his lesions on the brain. I am always searching for info to help him with this terrible disease.
Betty
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1 ReactionHi @flowbluelady, welcome to the MS group on Connect, where you'll meet other members like @disneyfan @ricksraleigh @ydawson @tashanharrell @kcowan16 @sauvee and others. @kariulrich's sister was recently diagnosed with MS and like you is learning more about the condition to support a loved one.
FlowBlueLady, while we wait for others to join the conversation, can you share a bit more about you and your husband? What symptoms does he deal with at the moment? How are you doing?
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2 ReactionsI am here on behalf of a friend. The left side of her face is tingly and numb. She went in for an MRI and they found 2 lesions on her brain. One is at the Cerebellum, close to the sensory nerve. the neurologist wants to do a 2nd MRI to see if it has grown, a month later. Thinking it might possibly be Multiple Sclerosis, they will test for that on May 1st. The 1st MRI was done on 2-20-19. The 2nd will be done approx 4-12-19. Concerned about waiting to do these tests and if it is growing, is it not good to wait? Has anyone been through something similar. I would appreciate your feedback.
Hi, @camper, and welcome to Mayo Clinic Connect. You must be a very caring friend to be standing by her side and looking into this on her behalf.
You may have noticed I moved your post to this existing discussion on multiple sclerosis (MS) so that you can connect with others with similar experiences. Simply click VIEW & REPLY in order to read what others have said.
I'd like to encourage @flowbluelady @disneyfan @ricksraleigh @ydawson @tashanharrell @kcowan16 @sauvee and @kariulrich to offer their support as you seek to help your friend as she waits for the 2nd MRI a month after her 1st to see if the 2 lesions have grown and assess whether she may have MS. They may be able to offer some insights on whether this is good to wait for the next MRI if these are indeed growing.
How is your friend feeling about the waiting period, @camper?
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