Having a moan & seeking advice!!
Sorry....this is a long post! I have RRMS, diagnosed 2006. I had 2&1/2 years of Rebif, from 2008, stopped due to bad side effects. I then started daily copaxone injections from 2011. Following a relapse (my first since starting copaxone) in 2016, I switched to 3x week copaxone injections. Neuro wanted me to start Tecfidera instead (mainly due to bad lipoatrophy) but I declined. The possible side effects (I know not everybody gets them) really scared me and put me off changing. I am self employed on a part time basis, as that is all I can manage and work one to one with young clients in schools. I cannot face the gastro side effects for many reasons, as I already have issues, and flushes in front of small children may worry them etc!! I also have hypothyroidism, a pituitary tumour, anx/dep & bad IBS (mainly stress related) all of which I take meds for. I struggle on a daily basis with fatigue, IBS and anxiety but over several years I have managed to get my work life balance sorted to minimise the effects of these on my work. A combination of money earnt, working tax credits & DLA low rate enable me to do so. I saw my Neuro at the end of June & it was an awful appt. I hadn't seen him since before my relapse in 2016 and he didn't seem to know why, blamed the MS nurse, was flicking backwards and forwards through my notes, took a personal phone call and had his next patient sat outside (when does he ake notes? Patient confidentiality?!) I got frustrated and ended up in tears as he was 'grumpy' that I hadn't changed to Tecfidera! I explained I had only had one relapse in 7 years, only side effect of copaxone is the lipoatrophy.....and I don't want to change to something with potentially bad side effects as it will massively affect my day to day life etc and that is a huge risk for me. So, unless I HAVE to change I don't want to! We talked about possibly having a total break from meds to see how I am.....I am trying to cut down the amount of meds I take and manage my stress as all meds have their side effects and I want to be on as few as is possible. He agreed I could stops DMTs and he will continue to see me annually. Based on my relapse rate (very few) he said if I need to restart in future, we would discuss best options then. He told me he wouldn't advise it but it would be ok to have a break. I am seeing MS nurse on Monday to discuss this further.....and to ask all my questions so I can make an informed decision as to whether I come off DMTs or not. My gut feeling is, I don't want to start Tec and I do want a complete break to see how I am. BUT my fear is whether that would be a bad thing?! To add to it all and increase my stress.....this week I have received my letter from DWP to say my lifetime award of DLA is stopping and I have to apply for PIP and have a face to face assessment. If I lose this, I'm not sure I can manage on the small wage I earn and WTC :( I will also talk to MS nurse about this but am feeling so anxious and stressed with everything. Any advise about stopping DMTs, applying for PIP etc much appreciated, thanks in advance
Was assessed early on this year. It was a joke, was assessed by Capita, a private company. See the secret filming from Panorama, in the classroom where they have to spend 2 weeks before they are allowed out on Joe public, if they see 10 people a day, they are 'encouraged' to only pass 8. I don't know what area of the country you live in but be very careful. Capita have offices in the middle of my city, there are no parking spaces, disabled or otherwise, when you make your way in, on foot, they ask whether you can walk more than 20 yds (if you have a mobility car) if you say no, they say, with great relish, that you must be able to because they have you on film doing just that! (They gave cameras at their entrance for just this purpose). A few people have had good experiences with being assessed, they have even been given higher rates of PIP than they were on before, perhaps I was just unlucky. My mobility car was taken away in February, I have had one for 19 years, I don't walk, have an electric wheelchair, had all the adaptions on my car so I could drive anywhere, I now have to go to court to get my car back. They said it would take 6-8 months, I called the other day and was told it will be after Christmas! MS nurse is arranging a Neurologist home for 12 was, Dec,Jan,Feb, because my electric wheelchair does not work in the snow, so if we have any I need to be looked after in one cos I can't even go to the co-op for a loaf and a pint of milk! If this happens the home costs £3000 a week, and the tribunal about £20k, so the governments cost saving exercise is going to cost far more than the cost of my mobility car. Answer the questions honestly not forgetting to base them on your worst day when you can't do things. Don't be lulled into a false sense of security, most of them are out to catch you out so be very careful.Good luck😍
@jules71 , first things first, anxiety and stress will be bad for you. It may also be responsible for any MS activity whilst these stressful situations exist. You need to ensure that you have enough information to make informed decisions and prepare your application for PIP. The following document provides detail of the present Disease Modifying Therapies (DMTs) :- https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf The following tool may help you decide about DMTs:- https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The following website will explain all about the PIP process and how to prepare:- https://www.benefitsandwork.co.uk/