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Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

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17 Sep 2025 12:54 EditedLast reply 17 Sep 2025 17:02

Anybody else's partners not empathetic about their MS diagnosis?

Woke up with a flair this morning my toddler has been up since 4am told my partner that I'm in a lot of pain in the right hand side lots of numbness and pins and needles. He told me to be a better mom but I'm trying the best I can I never asked for this multiple sclerosis. The feeling of invalidatio...

First posted on the Shift.ms app

16 Jul 2025 16:23Last reply 17 Sep 2025 11:15

After reading some of the stories on here, and realizing, I am not the only one actually means a lot to find some people that understand what I am going through. I just don’t understand why the doctors neurologist are just using me as a test subject and treating me like a science project And some of the stories are similar to what I am still going through how does anybody else deal with their bladder issues? I have a family member that does self catheterization, but I’m not doing that, but it is kind of embarrassing when you do have an accident in the middle of Walmart I’ve been using briefs to prevent it from happening again.

First posted on the Shift.ms app

17 Sep 2025 11:09 Edited

When you work in the neurology department as a scheduler, and your manager shares an anonymous patient feedback review with you: (Your scheduler, Kaye, is amazing. Initially, the soonest appointment was mid December. I think that's crazy for having a STAT referral and she was able to get me in much sooner due to a cancellation. She was very empathetic and understanding to my situation, I wish more people could be like her!) I have a feeling I know which patient this was. Little do they know I am advocating for patients more and more each day. I’ve been working on an email over the weekend (staying up until 3am the night before last, hoping I would have it done in time for one of their meetings with all the practice managers at all four locations) to upper management about my suggestions on a new approach to the waitlist and how often gaps are still left open on providers schedules, even when there are 200-300 new patients just desperate to be seen. They’re not only patients with MS, of course, but I remember what it felt like, not knowing what the cause of the numbness and tingling in my lower extremities were. I was diagnosed at 25, only five years ago. We are telling patients we do not have any appointments available until March, 2026 but patients who need to cancel last minute leave gaps in the schedule and there is no accountability or structure in place when it comes to the waitlist. I filled four 40-min new patient spots just last week, so patients did not have to wait until 2026, and already this week, I’ve filled two more. I am planning to make a proposal of taking on the project of waitlist management across all four locations, because I want to ensure it will actually be done right. I work from home, the clinic is only 30 minutes away, but the primary purpose of my current role is non-clinical support that answers incoming calls from patients who are looking to schedule appointments, request medication refills, ask for results from tests, etc.I would much rather be trying to get these patients in as soon as possible, while the others handle the medication refill calls, and assist with scheduling routine follow up appointments. I never knew what I wanted to do career-wise until now. When I was first experiencing the neuropathy at 25, I still don’t know how they managed it, (I was not working in this department yet, but it’s why I choose to work in it now) but I was able to be seen ONE month later. I remember how scared I felt. I went to the PCP first after the symptoms did not go away for two weeks, and then she referred me to neurology. Looking back, if they told me I had to wait MONTHS to be seen, I honestly don’t know what I would have done. There are times I wish I could tell patients that I have MS too, especially when they talk about their neuropathy. They will say: “Can you imagine if your legs felt like that?” and all I can think to myself is, “24/7.” 😂🙈I will never stop advocating for patients. They need someone to speak up for them, especially when the world can be so unfair already. It costs nothing to be kind. 💕

First posted on the Shift.ms app

17 Sep 2025 10:32

“Look for what you notice but no one else sees.” — Rick Rubin

The Creative Act: A Way of Being

Langley, Canada

7 Aug 2025 23:29 EditedLast reply 16 Sep 2025 15:35

Has anyone been on Tecfidera? Is it any good? Any major side effects? How do you feel after taking? I’m all out of options thanks to insurance not wanting to pay for Ocrevus or Briumvi.

First posted on the Shift.ms app

15 Sep 2025 15:31Last reply 16 Sep 2025 00:48

I'm feeling very tired today have been for the last couple of days is anyone else feeling that because I'm not sure why

First posted on the Shift.ms app

15 Sep 2025 19:22Last reply 15 Sep 2025 21:38

Hi my name is Gigi got diagnosed in 2000.so 25 years with Ms.i have a bad spasticity. Did any one try the baclofen pumps? And how isit? Did work well or not??

First posted on the Shift.ms app

14 Sep 2025 11:23 EditedLast reply 14 Sep 2025 23:39

I have tried several medications to help with my insomnia and nothing has seemed to touch it. I have failed on trazodone, amitriptyline, Seroquel and topamax. Any advice from anyone else suffering with this as well?

First posted on the Shift.ms app

13 Sep 2025 18:21Last reply 14 Sep 2025 02:37

Hello everyone! Can someone post good food ideas that’s not so yucky , I’m still trying to transition to a healthier diet and it’s hard for me

First posted on the Shift.ms app

12 Sep 2025 18:27Last reply 12 Sep 2025 18:32

Hey everyone, it has been a while since I have checked in with the group. I have still being tested and poked and prodded and my neurologist is still saying it is MS even though he has not found the signs he is looking for, but all of the other things he has been testing for has been coming up negative And he says that the only thing left is MS and I’ve been told by several people don’t expect them to find what they are looking for as quick as I want them to find it. It takes time and it just feels like I am their personal science experiment at this point, but they have put me on some prescriptions to See if they will help me and I have also been doing some apothecary treatment that seems to help my nerve pain a little better than everything. They have been giving me. I have been treating myself with apothecary and their prescriptions and it seems to take my pain level down to a level two cause on my good days I used to be a level four and on my bad days, the scale wouldn’t go high enough to measure my pain when I was having flareups, but both my primary care physician my neurologist, both said to never go back to work because I am considered a liability, a fall risk and I have seemed to agree with them about going back to work for the fact that I have to take frequent breaks to catch my breath or energy And a hour break turns into a two hour break for me just to make it through the day I have to take at least 15 to 20 small breaks the last job I had before my doctor told me to stop working. They let me go for the fact that I had to Take too many breaks and half of them were to use the bathroom to change my urinary products and I have learned if I push myself too much I will not be worth anything. The next day there are days where I hurt so bad I can barely get out of bed, but with the treatment that I have been doing, they have been getting less frequent and I have been able to manage to have more better days than bad days but when the bad days hit, they hit hard but overall, I am still doing pretty good and I haven’t felt Pretty good in a long time. I know I’m not going to ever be completely cured but with the management I have been doing it has seemed to help a lot more than just what the doctors have been wanting me to do the apothecary. I have been using turmeric a super B supplement And cayenne pepper and it seems to help the medication‘s. The doctors have me on work a little better my nerve pain and joint pain are not as bad anymore. When I wake up my feet do not hurt as long as they used to when I first hit the floor and I have been working on my diet and the foods I’ve been eating to see if that will help and I appreciate the group, it has really helped me find the support and guidance. I need to keep myself motivated to keep my treatments going.

First posted on the Shift.ms app