Shift.ms

20 Jan 2017 13:13Last reply 24 Mar 2020 21:56

The root causes of MS?

Been dealing with MS for 3 years now. After some research I realized all modern medicine had to offer was "symptom management". My doctors weren't interested in what was causing my MS or curing it, only providing me with RX drugs to control symptoms. (and keep my drug dependent $$$) So I started res...

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@Kaye153688

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

@Jimmy369VT

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

1

@Dani1427

29 Aug 2025 21:43Last reply 8 Sep 2025 03:18

Anyone else have weird mouth problems? I feel like my tongue is always dry and my teeth hurt. It’s way worse if I take my adderall. I know the ms meds cause dry mouth but for the past almost two years it hasn’t gotten any better. I’ve tried the mouth wash and spray, sucking on hard candy. I can’t chew gum because of TMJ. Suggestions?

First posted on the Shift.ms app

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@mrym4444

7 Sep 2025 05:41Last reply 7 Sep 2025 10:05

Why neurologist of this world can't understand the cause and cure of multiple sclerosis? I can't handle it now. Headache, pain, numbness, inactive bladder, can't exercise from numb legs.... I can't live with it now.

First posted on the Shift.ms app

3

@JenWolz

6 Sep 2025 01:42 EditedLast reply 6 Sep 2025 05:51

Can muscle spasms be caused or worsened by...

I have heard that lifting maximum amounts of weight (like a weight lifter) can cause stress on the nervous system. Can that cause muscle spasms to occur more frequently and in more muscle areas?

First posted on the Shift.ms app

1

@show

24 Aug 2025 18:15Last reply 25 Aug 2025 14:28

Gabapentin -does it cause dementia?

First posted on the Shift.ms app

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@jumpingJacks

11 Aug 2025 17:36 EditedLast reply 18 Aug 2025 18:55

RRMS SPMS Treatments Ranked by How Well They Stop Relapses That Cause Damage to Your Brain, Spinal Cord & Optic Nerves

Relapses in MS are attacks where your immune system wrongly attacks important nerves inside your central nervous system (CNS) that means your brain, spinal cord, and the nerves connecting your eyes to your brain. These attacks cause damage that can lead to disability. The right treatments help stop...

First posted on the Shift.ms app

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@msunicrn56

10 Aug 2025 07:35