#not - Shift.ms

3 Nov 2020 15:15 EditedLast reply 25 Jan 2021 11:51

Things not to say to us

1. I hope you get better. 2. Jesus will heal you if you just keep praying. 3. My neighbor Amy has multiple sclerosis, do you know her? 4. Yeah, but you’re not actually properly disabled, are you? 5. H-E-L-L-O! HOWWWW ARE YOUUU? 6. Were you born that way? 7. You don’t look sick to me. 8. How do you ...

Falkirk, Scotland, United Kingdom

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@RachaelLouise

7 Sep 2018 12:28Last reply 10 Sep 2018 14:59

Really not happy with my medical team ..

I’m having a bad time at the moment had relapse and steroids a few weeks ago . I’m just fed up of being treated badly . It’s like they think we have all the time in the world - we have lives or want to have a life Just because my body got sick doesn’t mean I don’t want a life They Just mess arou...

52

@bonnielassie

28 Jul 2009 12:35Last reply 13 Jan 2015 16:30

Notifying DVLA of MS diagnosis

Did you know you are meant to inform the DVLA when you are diagnosed with MS (and other illnesses). I have only just found out (diagnosed 6 years ago!). I suffer from back pain but in 'remission' as far as my MS goes but still have to notify the DVLA.

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@lilbird

8 Sep 2015 21:08Last reply 21 Sep 2015 04:29

so... why not choose Lemtrada?

I'm really just curious to know why those of you who have opted for other treatments passed on Lemtrada? It's starting to look to me like the most logical option & there are certainly many people on this site who strongly advocate it. I guess what I'm asking is, is there something I'm missing ...

41

@MarkP

18 Feb 2016 12:36Last reply 27 Feb 2016 12:10

Notifications!

Is it just me? My notifications still lead to a 404 error. Also have just noticed that even though I am being mentioned recently “@markp” in posts I’m not being notified at all now here or by email! Have my cognitive issues spread to ShiftMS!

34

@RachaelLouise

29 Nov 2017 22:13Last reply 22 Dec 2017 19:54

Anyone chosen not to be on dmd?

Hi, Has anyone chosen not to be on dmd s and if so how do you manage your condition without dmds ? My neurologist has not offered me them unless I have another relapse which I can see his way of thinking . Do any of you go against the neurologist and not take them and how do you manage ? Rachael �...

26

@Cosine

11 Jun 2019 17:44Last reply 2 Jul 2019 20:57

To stick or not to stick

Ok so im having issues walking . If I shuffle slowly and take small steps Im ok but if i try to walk normally I lose balance. I've been like that for 5 days now. I noticed that i can walk faster ( almost normal pace)with a stick . Should I use it? My doc did tell me in the past its best to stay off ...

24

@amo123

17 Jul 2017 19:31Last reply 26 Jul 2017 03:22

To take DMT's or not. That's my questio

To take DMT's or to not take DMT's - that is the question... I was diagnosed in June 2017, and have been given no advice from my neurologist other than go and look on the MS website, see which drugs are licensed in the U.K. And make a decision on when, and if I want to start treatment and to decide...

23

@jonnydrama

28 Jul 2013 19:31Last reply 2 Aug 2013 16:43

(not MS related) Age

So if people try and guess your age what do they say? I'm 27 and my brother is 33, I've had people ask who is the older - which is just plain nasty! The worst I've had though was when I was 25 and the new boss who had come in at the pub I used to work at, said I looked 33. The harshest one yet! Hope...

23

@Bobby79

15 Dec 2019 16:11Last reply 6 Jan 2020 22:22

Not yet diagnosed

Good evening my name is Bobby and three weeks ago I developed a dropfoot on my left side two days after I started to get pins and needle is in my left leg and left arm I have private insurance so my GP sent a request and I was seen by a neurologist probably about two days later my neurologist sent m...

23

@jps1980

30 Jan 2019 13:46Last reply 24 Jun 2019 12:37

Not coping well after diagnosis

HI everyone I'm 38 years old and have recently been diagnosed with Ms after having ongoing problems with my vision. It took over 12 months to get my diagnosis and not finding things easy. I'm a father of four and I'm married, I've always had problems with my mental health but have been very low si...

22

@Luv_Ma_Name

25 Mar 2021 18:41 EditedLast reply 31 Mar 2021 18:20

Not the news I was expecting! Rant and advice much needed 💖

I received a letter from the consultant this morning saying the MS was stable compared to last year's MRI and that tecfidera is OBVIOUSLY working! I believe that since last year I have become progressively worse. This is so confusing!! Has a relapse really lasted over a year and continuing? There ...

22

@HocusPocus

20 Jul 2019 18:12Last reply 28 Aug 2019 10:22

Not diagnosed - but truly convinced!

Hi there, Team Shift.MS, First of all - just wanted to say what a nice, upbeat site this seems to be. I've been sniffing around a few other MS/other random symptoms websites, but the vibe here seems really positive. :) So, hello, first-time poster. At the mo, the only MS I have stands for 'myster...

21

@KrisP

5 May 2015 10:48Last reply 11 May 2015 09:20

Not Ms?

Hi guys Come from my second opinion neuro Told him all the symptoms and he did another neuro exam all normal He's looked at scans again all normal apart from disc protrusion at three levels, which impact the centre of the spinal cord quite badly He said its not Ms it doesn't present like this and i...

Symptoms

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@Bexvm

26 Feb 2020 08:11Last reply 9 Mar 2020 10:06

Not good on drugs

So I stopped gabapentin ages ago as I was trying to figure out what was causing my breathing issues (wasn’t that but good ol’ ms) but the nerve pain and numbness came back with a vengeance. I started Pregabalin but am now withdrawal-ing from that since yesterday. The blurry eyes, dizziness and thump...

21

@RachaelLouise

14 Jul 2017 14:49Last reply 17 Jul 2017 13:44

Newly Diagnosed and not sure ….

I was diagnosed last week and not sure what I am doing . Can anyone offer me any help? Thanks Rachael

20

@angelbum

5 Apr 2015 00:50Last reply 14 Apr 2015 01:53

Has anyone ever noticed

I have worked with a few people with ms over the years in my work . I also have a friend who has progressive and is wheel chair bound . What I have noticed with people with ms . Is the eyes . Now your going to read this and say what ....is she crazy but start really looking . You will find a lot ...

20

@Monica2015

7 Nov 2015 08:48Last reply 10 Nov 2015 07:32

Reply notifications by email?

Hi, does anyone actually receive these? I used to when I initially joined the site a few weeks ago, but since the site "revamp", I might receive one out of say ten...so I have no idea if I'm persona non grata, or I'm inundated with helpful advice! I have emailed the powers that be, to no avail as th...

19

@cherish

16 May 2015 10:11Last reply 28 May 2015 15:07

Funny, but sometimes not........

Call this silly but it's so true.... Let's say you are going down a rollercoaster,,,,, well you know that feeling in your tummy? Exchange that feeling to the calves of your legs. I know this is definitely the MS but it's so uncontrollable, it can go on for hours, I hold onto my leg hoping it stops b...

19

@jreberg74gmail

16 Jan 2019 16:49Last reply 19 Jan 2019 05:15

Not on drugs by choice

I would like to reach out to others who have chosen not to take DMT. have you regretted this? And how long have you been diagnoised? I was diagnosed in 2007, chose not to start dmt and have been ok with this decision. After joining this group, i am realizing that i have had more ms issues then i tho...

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