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?
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
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!
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!
@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.
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!
@ydawson Physical therapy is a great idea! Looking forward to hearing from you again.
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.
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.
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/.
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?
@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?