#feed_back - Shift.ms

@Jamarm

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I have foot drop is there a medication out there that helps better then others for that any feed back greatly appreciated

First posted on the Shift.ms app

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@GlassHalfFull247

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Need feed back on Suprapubic Catheter

11/10/17 I had a Suprapubic Catheter put in. The bladder spazums are intense!! Not only that I have the feeling of being stabbed with a knife in the vagina. My Urologist has not promised a light at the end of this very painful tunnel. I have not been told this is normal or abnormal. I'm worried. Thi...

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@SamuelJS

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Encouraging feedback

Came across my MRI brain scan results rescently, which was done back in april, encouraging feedback from my nurologist which, 'revealed reassuringly stable appearance.'

London, United Kingdom

First posted on the Shift.ms app

2

@Kaye153688

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

@TheMSGamer93

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Advice and feedback

So I've had MS for 10 years and these past 3 months I've had 8 falls the most I've had in 10 years. I don't think i have relapsed, I think I have just lost my balance because before the 3 months of falling over I did notice that a few months back before the falls I was holding onto stuff so I could ...

Rubery, United Kingdom

First posted on the Shift.ms app

19

@Keila

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Feedback

Hi everyone I'm a newbie...i don't know much as of yet but I want to get start on views from others and what works or don't. Right now I'm taking tizanidne for muscle spans and tensions around my head that cause numbness, or tingling around forehead, down side of left face also middke of face around...

2

@freddiems

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Text Tombola: New PRIZES and feedback please

Hi All We have just added two amazing new prizes to the text tombola project we are running! We have signed books from the incredible photographer Rankin and ten pack of marvellous Sugru, the self-setting rubber to hack things better. You can check out the project here - www.shift.ms/texttombola...

1

@sahil

Feedback

For the past two days, both of my eyes have been red. I’m not sure whether this is because of MS or if it is some kind of infection. When I was first diagnosed with Multiple Sclerosis, my eyes also became red at that time, and the vision in one eye decreased due to optic neuritis.

First posted on the Shift.ms app

@ambershift

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Member feedback sessions are open 🥳

Hey! If we haven’t met yet, I’m a UX Designer in our app development team, and I’m inviting you to help shape what we build next. We’re hosting weekly 30-minute feedback sessions to chat with members about their experience - what’s working, what’s not, and what could be even better. Your feedback d...

First posted on the Shift.ms app

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@PepperMS

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I would love some feedback from people who have had RRMS and have progressed to SPMS. I was recently rediagnosed. I know MS is different for each individual but I’m wondering what I might expect the future to be like for me.

First posted on the Shift.ms app

10

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