What is the most frustrating or difficult aspect of living with MS?

It has become difficult for me to comprehend elapsed time. I usually have no concept of what time of day it is. I also have difficulty with understanding time in the fact that things that happened a year ago feel like last week to me. Is this just my memory deterioration? Anyone else have a similar struggle?

Hi All –

Thank you for sharing your experience. If you are interested, I would like to offer you the opportunity to share your experiences on a platform with others in the Life Sciences industry. The consulting company I work for and I are looking for a patient to serve on our panel for a Patient-Focused Life Sciences Fireside Chat in which we will discuss the evolution of decision-making power in the life sciences industry. We are looking for a patient who might be interested in sharing their perspective on the following: What is the changing role of patients in their treatment, and what patient-centricity mean to you? How do you think the role of the patient will evolve in the future? How can the Life Sciences industry stay ahead of patient needs?

Please let me know if you would be interested in serving on this panel. My email is erin.getty@capgemini.com.

Thank you,

Erin

needing others 

I just went back to school and it is so hard with the fatigue. I feel like I can never get it together

@MHeidick That’s such an interesting way of describing it but yes I understand what you are talking about. Time seems to run together. I find myself not being able to recall parts of it. 

Having MS sucks because i dont what to do with my self because i am always tired and fatigue i have problems with my legs its hard to do things like i us to it sucks i am in pain when i do alot of stuff it gets me down because i have no one to talk to about it 

I am 75 take Rebif Redidose. My funding has stopped as of December 2020 for my copay. I will not be able to continue treatment. When you are on Medicare you have to get your own funding. The one I used this past year has no more funding for MS. At my age I guess I will get me a wheelchair and sit it out. 

slowly I'm falling apart im.mot used to.l posing ability to.walk,stand sit up ect.im confined  to.wheel chair when.i used go to gum.ect untill.May 2020 then my life started going down spiral, now I'm got swallowing solid food hard food it chokes  me and I feel  like I  I'm a lab rat,I have no matter

 Friends  none to.get advice ect from

I wish the had homes or apts just for MS folks. We would at least fight together.  I am miserable married and still no one to talk to. My family just does not get it. 

Most frustrating thing for me is loneliness.  I've had this for eight years and now walk with a cane.  I can hardly write anymore.  I've lost 4 management positions in this time period and am on disability.  Boo.  I really enjoyed working...