At what stage in your ms progression did u apply for ill health retirement and were u successful?
when i first became aware of a problem, it all kicked of really abruptly and agressively after a fall on ice (my neurologist has referred to me as ‘oh yeah… you’re the one who fell on ice’ a few times). i’ve been fighting pain symptoms ever since, as well as lots of other ms delights. after about a year of being on the sick, i was assessed for ill health retirement, by a doctor who very assuredly informed me that pain wasn’t a symptom associated with ms, which just horrified and upset me at the time. i spoke to another doctor about 2 days later, a colleague of the doctor who assessed me, he was far better informed about ms and said he would have a word with her, i’d gone to see the second doctor armed to the teeth with ms society info about pain symptoms frequently experienced by msers, but i didn’t need it. thankfully i got my (small) pension released.
you don’t say if you’re ‘jumping through retirement hoops’ yourself, but if you are, good luck.
wendy x
Rose,
I suffered my first “attack” in 2009. I commuted to London which lasted about another 6 months, I had highly active RRMS and applied for ill health retirement at that time. The HR department said it was too soon as I had not had a day off sick for 5 years. I took the next 6 months off, as my GP signed me off as I couldn’t get around by then. My GP and Neurologist confirmed that I wasnt fit to do my job, 6 months later my employer confirmed my retirement.I was 50 at the time. My EDSS score was 6. Hope this helps. All the best, Peter.
I was dx in 95 = took a year off sick (part of that was during the dx phase) and then took ill health retirement. Things were probably different 20 years ago but with my consultants support I had no difficulties. I was crippled with fatigue at the time and had dreadful Trigeminal Neuralgia. My then husband had a very good job so we were OK financially – it just seemed the obvious solution. I don’t regret it even though I loved my job.
Jane
Thank u for your help… not in loop yet…my only concern is financial… Am a band 7 in NHS and currently work 22.5 hrs/WK and am v.tired of pitying looks and adjustments needed to keep me working in a role that is not what I trained to do
Hello,
Long story but I will keep it brief. I was a free lance computer geek and travelled every where. First relapse in 1979, diagnosed in 1995, SPMS since 2000 . Went for an interview for a contract in Jan 2012 and realised it was all going to be too much for me so stopped work. Doctor signed me off, no problems there. My EDSS score was 6.
On reflection could have stopped work sooner, sometimes wish I had but nothing to keep me occupied at home. Now got a website and busier than before but no travelling so an easier life
Patrick
Hiya
I was diagnosed in 2005 and carried on working for as long as I could with adaptations until I was falling regularly at work and had to be brought home on many occasions. I retired through ill health in 2012 at the age of 51. My line manager suggested it after 6 months off sick with a broken foot.
Shazzie xx
Hi, Please could i just ask what is this ‘EDSS score’, sorry if im being a bit thick! ritchie
The EDSS scale is from 0 to 10 and it gives some sort of evaluation to the stage of your disability. See http://www.mult-sclerosis.org/expandeddisabilitystatusscale.html but it does not take pain and cognitive functions into account.
G
thanks g!
neuro told me 7 last week and wondered what it meant! i had other questions for him and forgot to ask him to explain.
ellie
Hello,
EDSS is a bit of a curates egg. Upto about 3.5 it is lookig at how MS is affecting you as person, then up until about 7 it is measuring just mobility then it is looking at quality of life, a score of 10 is not good news. It is saying that you would be better off dead. When measuring mobility it is very subjective and takes about 40 minutes per person.
It is taken as the gold standard but is not objective. I think they are developig a test taken as a result of a lumbar puncture as completely objective but it takes a long time, one hour to extract the spinal fluid and one hour recovery. Also idea of doing an online EDSS test that you do yourself. I’m not too sure what has happened to that idea.
To be honest MS is so complex I do not think any 1 test would suffice. Anyone got any better ideas?
Patrick
I work with young special needs pupils and my symptoms are dizziness, loss of balance, feeling intoxicated when walking,and loss of control of my right hand for a couple of seconds when having a ‘do’ and my right leg goes heavy. I get clusters of ‘do’s’ that can last up to two hours and every 12 - 15 seconds I get a nerve pain behind my left eye into my head and down to my mouth. I never know when they will appear. The result is because there is a lot of bending down to tend to the little ones, them running off, picking things up, cutting and other school stuff I will endanger them with my balance and dizziness and I can’t be sure I wont ruin their work if my hand goes wappy. Anyway, I’m off work (this is the start of my 8th week) and I went to the school and I spoke to my boss about arranging an Occ Health consultation (which I thought he would have done already) as I want to return to work asap. I’ve been there 19 years and it’s part of life for me. He suggested that he ask them to speak to me about ill-health retirement but I’m only 49 (50 this year) and there is a senior end to school - I think I’d manage there or at least give it a go.
Chewitt, speak to Occy Health about supporting you to move to work with the older children, and good luck. When I first developed balance problems, my managers helped me make a sideways move from a job where there were concerns for my safety to a desk job with no particular concerns as this was considered the best thing by all of us.
Thanks Mitzi, I’m waiting to hear from them. Do I take anyone with me? Are they on my side? I’ve never been in a situation like this before.
I’m probably going to try over the next few months, my EDSS is I guess between 8 and 8.5, I feel like I’ve left it too long but have been scared to take the plunge in case the income protection insurance from work doesn’t pay out.
Chewitt, my employer has an Occupational Health department on site and most of the staff are medical professionals (nurses, a doctor and a physio). I have never felt the need to take anyone with me when I see them, unlike with my hospital appointments (to which I always take my husband).
I feel like Occy Health are on my side and had my managers not been helpful over a job move, I am sure they would have supported me. The best thing is to keep me working (cheaper than recruiting and training someone else!) but they have to balance that against the legal obligations on the company regarding my health and safety. I would expect your Occy Health people to support a move to working with older children where the risks to them and you are much less. They may also be able to suggest adjustments to the classroom and the way you do certain tasks to make things easier. That comes under the heading of ‘reasonable adjustments’ that employers should make.
Ultimately, retirement is expensive so should be the last resort, not the first choice. Good luck.
Mitzi thank you for this info! I will see how my first appointment with Occ Health goes and take it from there. I don’t want to consider retirement seeing that I am only 49 and I feel I should at least be given the opportunity to try working with the seniors. My head and I get on well at work but I am not naive enough to think he won’t try to test me because of the MS to see if I can cope in the senior end. Oh well - we’ll soon know. Thanks again 
Now to wait to hear from Occ Health!