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I know that it just isn’t possible to stay positive all the time in the face of MS, and we shouldn’t be expected to, sometimes it’s tough and we just need to let ourselves feel how we do in that moment. BUT I would really love it if from time to time we could all share something that we are proud of, or something that happened to make us feel good, even something small. For example, mine is that the other day I was feeling very run down and tired, but had planned to meet up with some friends that I hadn’t seen in some time for a “paint night” where they teach you to do a simple painting all together. I didn’t think I could do it, but I wanted to try and pushed myself to get out and ended up having a really nice time, and even thought I was exhausted when I got home, I was so glad I tried!
Is there anything you can share that made you feel proud, or positive in some way?
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HI everyone. It’s been a long time, but MS Hacks is back. This time, I’d like you all to tell me what you would like to see as the next topic.
for those of you who don’t know it, this feature is a way for us to share tips and lifehacks that we actually use in our own lives to make living with MS that little bit more manageable. So far, we’ve looked at dealing with the Summer heat, fatigue management, and working around cognitive changes. Which topic do you think could be most beneficial for you, right now?
Hi all, Can anybody recommend a diet they feel is helping?
I read/see a lot of different things, basically most just recommend cutting out all the so called bad things we westerners eat, days,meat etc ???
I have had some recent issues with having a few items cooked in fat! Stomach aches etc and I am thinking there is a correlation?
I hav has MS with seizures for about 17 years. I have techfidera and several other meds. They have slowed seizures, but I am dizzy and have walking and balance issues. Is anyone out there having similar issues and if so, is there a cure or am I getting ready to get worse? Thank you.
Hi! Has anyone done or participated in any fundraisers for MS in their community? I would love to have one but don’t know where to start with this. Any tips or experiences would be helpful – thank you! 🙂
My name is Linzie-im the one with dark hair in my profile pic 🙂
I was diagnosed with RRMS when I was 23 (I’m 33 now)
Ive been pretty much the same with relapses here and there throughout. I had 3 relapses in the first 10months of my diagnosis and was offered DMT’s but I refused as I wanted to go without for as long as I could with v.few meds…..that was untill now!
Ive had spasms, MS hug, vertigo to name a few but I have recently (July 19) had the worst relapse ive ever had and it seems to be never ending! I had to call in sick for work (psychiatric nurse) but ive since been told I can’t go back to my job doing the same role as its a high risk ward 🙁 I love my job but I’m just not physically able to do it anymore😢
I went off sick and 3days later I couldnt walk, drive, shower myself, cook my food, carry anything (and I live alone) two weeks later I woke up one morning and couldnt see 😭 It has been horrific! My cognitive function is also shocking to say the least! My sick pay has gone to half pay, I’m claiming pip and I went to universal credit last week so I’ll be receiving a bit off them at the end of the month but they make me feel so guilty about not working etc (even though I’m still employed) Im off work sick as I’m not fit enough 2go back to work at the moment.eugh its just so frustrating.
Anyway I’m currently taking plegridy ive had 2injections but I’m currently v.bruised from the latest one. Anyone any advice on this peginterferon injection or beta interferon it might be called🤣
Apologies for this essay just helps to get it all out sometimes!
Hi All. Has anyone got or had the Functional Electroid Stimulation fitted? I have my first appnt in January and wonder how it works and if it actually help on Foot drop? Mags
I got a cold which developed into a chest infection 3 weeks ago. I got 7 days antibiotics which was helping but didn’t quite shift it, and the next GP I saw was useless and said it should have been enough so to just go away and it would improve. It didn’t, it got worse again so I returned and received another 5 days of a different antibiotic, which they will extend to 7 days if it’s not quite done the trick. I’m on day 2 of the 2nd lot of antibiotics and I am feeling better than I was yesterday so I think the antibiotics are working. The GP has urged me to return to the surgery tomorrow if it I’m not further improved and suggested if that’s the case I should get a blood test to check my immune system is strong enough to fight the chest infection/get a chest x-ray. I’m on Tecfidera, and my lymphocyte count is generally around 1.2 to 1.4 at the routine checks.
Given it’s lasting so long should I ring the MS nurse or is that not part of their remit?
Any suggestions, advice or wisdom welcome!! Thanks 🙂
Good news is MRI shows no interval changes since last MRI. Neurologists is suggesting this means there is no compelling reason to start dmt. Whats everyones opinion on this advice. Cis since 2015, diagnosed rrms 2019
Hi everyone. Hope you’re all well. This is my first post and I hope it is shared in strict confidence.
I am going to skip the details of diagnosis and move onto the biggest challenge I have faced since being diagnosed with MS. I would be so grateful of your opinions.
I was diagnosed with MS at the end of 2014. I remember spending Christmas that year not so cheerful! After nearly 5 years I have disclosed this to my employer.
That was the hardest thing I have ever had to do. It was so personal, embarrassing and having spoken to my boss and HR I told them to keep it to themselves. To me, nobody underneath management needs to know. I found it hard and quite frankly exhausting really keeping this from everyone. They respected my wishes and assured me that it is confidential.
To start from the beginning. I work as a Legal Executive in a law firm. Generally a career in law is demanding and has its own pressures. Despite years of blood, sweat and tears studying (through passing and also failing), I have still continued with working in it.
It was in July that work has been stressful. It was discussed with me that I should be put on a Performance Improvement Plan (PIP). All employers have them. I have not been meeting the standards of work for the firm. They said I will be looked at over a few months, monitored, send written warnings if I have not improved. If it escalates it can lead to dismissal.
When I was told I did not take it well. I was given a sick note from my GP for two weeks. During that time I went over in my head questioning whether MS has took hold of me more now. Towards the end of the sick note I woke up and decided to have an appointment with GP and discuss whether I should tell work I have MS.
My GP advised me that in his opinion I should have told work from day one. Although, I have been told that you do not have to.
I told work and they referred me to an Occupational Health Therapist. During the meeting with the OH, I was embarrassed and needed encouragement to share with the OH what I went through and how work potentially affects me. Also what kind of adjustments I think would benefit me. The most important one for me is having the time off to attend appointments with the MS consultant and DMT nurses.
My OH report has been received which has added to my embarrassment. However, HR have now come back to the OH to ask for clarity. Due to the stress and also the current client work coming in, the type of working I am doing is low at the moment. Allocation of work to me depends on my capacity.
I feel a little relieved but I am still embarrassed and I still fear the unknown. I just hope that as work are questioning the OH’s report, they are trying to get to the bottom of my condition. I fear that my competency will be questioned and I will get a demotion. To put this into more context. I have not long bought a house, which I saved up for after paying back my law exams and saving so much, to the expense of having no life. I fear that my house could be taken off me.
So my closest family. Mum, dad, my sister and closest cousins know about this, and now work know about it. For now, until I am ready I should not have to tell anyone else. I just think if I do I will just get a bit sympathy and then afterwards I might get treated differently. I am putting that on hold.
At the moment I would really appreciate your thoughts, opinions and experience of what I have just done.
Hi 🙂 !
How many times do you get an MRI done?
I was supposed to get mine in June (year follow up) but my old neurologist (searching for a new one) said there wasn’t a point in getting it because I decided that I did not want to go on a treatment..
It’s been a while since last Leeds Meet-Up but I’m thinking October 12th or 26th..?
Both are Saturdays, thinking 11am ish maybe
Hi was just wondering does anyone get burst blood vessels in fingers . Got bad one yesterday just from trying to open a jar it’s still bruised normally bruise go after few hours finger gone all numb now 😥 is it all part of ms r something else
I am experiencing really bad chest pains, I was diagnosed with mild MS last year and was put on Gabapentin but came off it as it was horrible. The chest pains are increasing in severity and I am my wits end, any advice?
Hi guys, just looking for some advice, insight…Was on Copaxone for 1 year 1/2 but unfortunately not working… my neuro wants me to start Mavenclad. Just wondering if anyone on this medication can tell me their experience, side effects etc…very worried about low immune system
Here is another article I have written about MS and the Nazis on the Barts MS Research blog:
This piece focuses on the Nazi propaganda film – “Ich Klage An” or “I Accuse” – which tells the story of a woman who has MS. The film was made by the Nazis to convince the German people to accept their programme of mass killing of the disabled. The Allies banned the film after the war – and it still cannot be publicly screened in places like the UK due to its incendiary content.
Warning – the content is very disturbing
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