Hey I’m Anna and live In London , UK . Was diagnosed with RRMS in Jan 2011 , so 9 years ago now . Time flys when your wobbly and hurting I guess
So not great start you with first relapse in 4 years , lost feeling down right side and leg . The steroids are really making me feel rubbish , hoping they do there thing as meant to be starting new infusion DMD on feb 5th .
Just feeling rubbish , isolated and trying to find new ways of connecting with people who get it .
Only positive I am taking out of this, is that I quit smoking as I can’t get out or feel well enough to smoke . Got to look for the positives
Look forward to chatting xAx
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Annabal82
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Hi Annabal82, so you live in London. What DMT are you going on? I have PPMS and I live in North Lincolnshire, I have never been offered any treatment on the NHS. We are having a coffee morning on here next Thursday 24th January at 5pm our time, this one is the first of Around the World in 12 months. The first country to visit is Great Britain so if you can make it, it would be nice if you can attend and tell us all about London, such as places of interests etc. This forum is a safe place to come where you can laugh, vent, share ideas, whatever. I hope you enjoy it, Blessings Jimeka 🦋
I have been on tecfidera since 2014 .. it was working fine for me but my neurologist found new lesions in 2017 . Never caused me an issue felt fine . They are now moving me to Ocrevus , which was only approved in UK in around November . From different groups Other country’s have had this a while and seen positive responses to it . Sadly I think they only offer it to RRMS, but they do have new infusions coming for PPMS a i was reading, think it has major results in Italy .
Latest relapse has flared up as I had to come of TEC for a few weeks while they sorted things out , then had to get back on it while they sorted start date . Can’t prove that is it , but the way my neuro was hmmming etc makes me wonder .
I live very close to St. George’s in tooting ( 24 hrs in A&E programme ) which has one of the best neurology in the country.
Sadly still so much unknown in regards to MS , just hope for everyone the next few years bring some amazing things.
Annabal82, MS is not our best friend! I am not going to sugar coat it - it is tough to live with. I have lived with MS for over 30 years and I have found that I need to keep positive. It is really easy to feel sorry for myself, but once I get through that, I try to pull myself up, by thinking of all the good in my life. It doesn't have to be big like winning the lottery - even like enjoying a beautiful sunset.
Hi SueAB , I totally agree I am lucky enough I am still active and work full time etc .
To be I think it’s the steroids messing me up. Have 2 more days on them so hoping mood will get more in a positive place.
Had to use walking stick for first time this week , but keep telling myself it’s there to help.. just ordered so new stickers for it . If I have to use it I am going to add some glitter . xAx
I’m sorry for what you’re going through. We have several members who use a Ocrevus and who are seeing very good results. It seems to take awhile at times for the results to be felt by the patient, but it shows every sign of being very effective. I hope you can keep us posted about your progress.
This group has become like family to me with the help and support they offer. Be sure to check mymsaa for lots of information and assistance.
Hi Anna I’m also a Brit and a northerner, I live in Lancashire and very nice to meet u and I hope u feel better soon and more in charge of ur feelings. MS is such a sneaky illness and it drives me mad most of the time! I have very active RRMS and my DMT is Tysabri xxxxx
Hi Annnabal82 I am ssdw1958 i also have this terrible disease MS I was diagnosed l in 2004 but I do believe I had it for a number of years before that. I also wobble and stumble which can be hazardous to the my health especially when I fall and I’ve done that before. Take it from me you really don’t want to do that.
I hope you feel better after you s and thaget your steroid one thing about after you take them you get a metal taste in your mouth and I had a nurse tell me that I should have a chocolate 🍫 candy bar after woulds you want to know something it really works. How about that someone tells you to eat candy.
I hope your day gets better.
Bye for now!
Ahh..This community is increasing in number and I don't feel really good about it.
Hello Annabal82 .
I don't want to say "welcome", but welcome. You'll find all the useful articles on MS and breakthroughs in MS, again - apart from some entertainment!!
You'd definitely like this group and I keep pulling legs of Jesmcd2 , Fancy1959 and others tima and again. Actually speaking "a pain in the "3/4 lettered word" - you know, US/UK style.
I'm very jovial and do not take negativity to heart. At all.
Hi Annabal82 ! Welcome! There is a broad spectrum of people dealing with MS here. We are a wide range of ages and experiences. I was diagnosed with RRMS 20 years ago. I’m now on Ocrevus. There are a bunch of us on Ocrevus here and we share our experiences so others will now what it’s like. It’s so new after all. You can search on Icrebus and find a lot of posts.
Nice to meet u Anna. Hope the steroids and new DMT help!🌈
Hi Anna - Welcome. It's nice to have this group to share our ups and downs with. Nobody understands except those of us who are living it. Hope the Ocrevus works out for you.
Welcome to the group. Hope the ocrevus works for you. I'm still taking Tecfidera. But there are lots of people on ocrevus here to let you know how they've reacted to it. So far I haven't heard any complaints.
Hello Anna...nice to “meet” you...I’m between DMTs and will be starting Ocrevus soon...hope your steroids and Ocrevus work out well for you...I read some good responses from others. 🦋🌷
Good morning and welcome to the family , Anna from Fancy in Kentucky USA. We are glad you have found us and I promise that we will offer you a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you are going through. Our members are some of the kindest, most compassionate, and caring people I have ever had the privilege to work with. You will find very positive support here and a place to come when you need to surround yourself with MS Fellowship. Until we speak again please take care and remember that together we are stronger! Fancy.
Hi Anna, sorry for the late reply as I have only just seen your post. I have had this since diagnosis in 1987,possibly even before that. I have been extremely lucky so far to avoid further relapse, never been offered a DMD as only sporadically seen a neurologist (not bad enough??) However I have picked up a few tips, sometimes by accident on avoiding relapse - not pushing yourself too hard (I am a poor patient in this regard!!), you should avoid vaccines containing live viruses such as the polio vaccine in the past and also I strayed onto a post a few weeks ago on the MS Society UK website discussing smoking which suggested that smoking may cause relapse but I don't know whether there is scientific research into this yet. The reason I mention this is because I myself was a smoker 30 plus years ago but gave up for health reasons after 5 years. I understand that it is difficult for many people to give this up but would urge you to think about it if you haven't already considered it. I have also been trying to follow a diet rich in Essential Fatty Acids and vegetables and fruit for the valuable nutrients in those. Maybe I have just been incredibly lucky in the very slow progression of the disease in my case, I really don't know, but in the absence of much expert advice I have just been following what I feel could benefit but also based on knowledge of nutrition etc. I do hope you manage to find something that works for you and look forward to seeing future posts. With affection, take care of yourself.
Welcome to the group.😀 Ocrevus has worked well for me and hopefully it will do the same for you. I have been on most DMT'S on the market and averaged 4 exacerbations a year. I have been on the Ocrevus for a year with only 1 episode.
I hope that makes you feel a little better about the change.
Again welcome to the group and hope you feel better soon.
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