1. < Multiple Sclerosis (MS)
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Moderator

Multiple Sclerosis (MS) - please introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Oct 20, 2016

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. 

Interested in more discussions like this? Go to the Multiple Sclerosis (MS) Support Group.

Profile picture for Mrs. D
Mrs. D | @ydawson | Oct 25, 2016
In reply to @ydawson "Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been..." + (show)
Profile picture for Mrs. D @ydawson

Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been a healthcare provider over 20+ years and I have seen how Multiple Sclerosis have crippled people throughout my career. Today they have no cure but the good thing is the medicine they have helped keep people alive and to continue to work with relapsing and remission. Next week I will be starting my new medication with the ability to continue to work. However, Multiple Sclerosis is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

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Yes the affects of the medicine has really blown me away, because back in the 90's there was no medicine to slow the progression down!

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Mrs. D | @ydawson | Oct 25, 2016
In reply to @colleenyoung "Hi Yulander, welcome to Connect. I'm so glad you found us. I actually moved your message..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Yulander, welcome to Connect.
I'm so glad you found us. I actually moved your message to the Brain & Nervous System group so that you could meet others talking about MS. Just a few days ago @ricksraleigh joined our community looking to connect. What perfect timing.

Yulander, when were you first diagnosed with MS? How do you manage work and relapses?

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I was first diagnosed September of this year, I am out of work for now I have not started my new treatment yet, that will take place next week! One note I will share if your not on disability, open enrollment has started go high on your premiums so you will be able to get speciality drugs! Low premiums want get you the best medications out there!

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Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 26, 2016
In reply to @ydawson "Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been..." + (show)
Profile picture for Mrs. D @ydawson

Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been a healthcare provider over 20+ years and I have seen how Multiple Sclerosis have crippled people throughout my career. Today they have no cure but the good thing is the medicine they have helped keep people alive and to continue to work with relapsing and remission. Next week I will be starting my new medication with the ability to continue to work. However, Multiple Sclerosis is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

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@ydawson Hi Yulander and once again welcome to Mayo Connect. I appreciate your ability to see the whole picture of your disorder. Meds have come a long way in treating MS and I'm glad that you will be trying a new med so that you can continue to work. Please share with us, if you want to, how it works for you. Also, have you been involved in any physical therapy or other exercise program? Thanks again for sharing with our Mayo Connect community.

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Mrs. D | @ydawson | Oct 27, 2016
In reply to @ydawson "Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been..." + (show)
Profile picture for Mrs. D @ydawson

Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been a healthcare provider over 20+ years and I have seen how Multiple Sclerosis have crippled people throughout my career. Today they have no cure but the good thing is the medicine they have helped keep people alive and to continue to work with relapsing and remission. Next week I will be starting my new medication with the ability to continue to work. However, Multiple Sclerosis is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

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Hi Hopefull! Thank you for your response. I will keep everyone posted on the affects of the new medication, but remember everyone MS is different, however, I will be starting a physical therapy program soon will keep everyone posted!

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Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2016
In reply to @ydawson "Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been..." + (show)
Profile picture for Mrs. D @ydawson

Hello my name is Yulander I have an autoimmune diseases called Multiple Sclerosis. I have been a healthcare provider over 20+ years and I have seen how Multiple Sclerosis have crippled people throughout my career. Today they have no cure but the good thing is the medicine they have helped keep people alive and to continue to work with relapsing and remission. Next week I will be starting my new medication with the ability to continue to work. However, Multiple Sclerosis is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

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@ydawson Physical therapy is a great idea! Looking forward to hearing from you again.

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1 reply
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nana52 | @nana52 | Nov 7, 2016

my adult daughter was diagnosed with MS and I see changes in her memory and her attention span. she is in constant pain and looses everything. Leave water running and flooded the house twice. burned her leg 2nd and 3rd degree burns and didn't know it. fell flat on her face and said she just slipped. Please help me understand this disease. she seems aloof.

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2 replies
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Mrs. D | @ydawson | Nov 8, 2016
In reply to @nana52 "my adult daughter was diagnosed with MS and I see changes in her memory and her..." + (show)
Profile picture for nana52 @nana52

my adult daughter was diagnosed with MS and I see changes in her memory and her attention span. she is in constant pain and looses everything. Leave water running and flooded the house twice. burned her leg 2nd and 3rd degree burns and didn't know it. fell flat on her face and said she just slipped. Please help me understand this disease. she seems aloof.

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Hi, all MS cases are different. Memory loss is one of the systems. I was diagnosed with MS this September and my joints hurt badly. The doctors cannot say how long she had MS system it's based on what she tell them once they discover she have MS. One of my nurses did share with me based on age the diagnosis could be worsened from 20-40 years old, but there are good treatments that can help with relapse. Just curious do she have a high premium insurance so she can afford the best specialty drugs to keep her from remission and relapsing? But remember all cases are different, for pain maybe a 5 day steroid infusion may help ease the pain until she began her treatment, with her memory lapses she need to do things right then and there. On a personal note I don't know the family belief but putting God first and prayer helped me. I hope this information was helpful.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 14, 2016

I just recently viewed a couple of videos that deal with MS and the emotional toll that this disease takes on MS patients. Please take a look at the videos and then let's discuss how we can deal with the feelings of losses on both physical and emotional levels. http://bit.ly/2gKTP2t and http://mymsaa.org/ms-information/videos/.

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1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 28, 2016
In reply to @hopeful33250 "I just recently viewed a couple of videos that deal with MS and the emotional toll..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

I just recently viewed a couple of videos that deal with MS and the emotional toll that this disease takes on MS patients. Please take a look at the videos and then let's discuss how we can deal with the feelings of losses on both physical and emotional levels. http://bit.ly/2gKTP2t and http://mymsaa.org/ms-information/videos/.

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Thanks for posting these videos about MS and emotions, Teresa.

@ydawson @ricksraleigh @nana52 @chefbrown - We haven't heard from you in a while. How are you doing? How were/are the holidays for you?

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Profile picture for Kari Ulrich, Alumna Mentor
Kari Ulrich, Alumna Mentor | @kariulrich | Dec 28, 2016
In reply to @nana52 "my adult daughter was diagnosed with MS and I see changes in her memory and her..." + (show)
Profile picture for nana52 @nana52

my adult daughter was diagnosed with MS and I see changes in her memory and her attention span. she is in constant pain and looses everything. Leave water running and flooded the house twice. burned her leg 2nd and 3rd degree burns and didn't know it. fell flat on her face and said she just slipped. Please help me understand this disease. she seems aloof.

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@ydawson thank you for saying all MS cases are different. My sister was diagnosed with MS 4 months ago and it is progressive. I would love advice from other patients on what I can do to best support her? It is difficult because we are in different states. I would appreciate any advice. @ricksraleigh I see that you posted that your Mom has progressive MS also, how is she doing?

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