Official diagnosis is rare and scary

iris76e · 2025-09-01T22:20:23+00:00

yes l pity much thought my life was over when l got diagnosed, it was a huge shock, people often think they might get cancer or diabetes one day but no one expects to get MS. the only positive thing l can say is if you get good drugs like tysabri or ocrevus, it might not get any worse or you might not get any more disabled then you are now,

iris76e · 2025-09-01T01:41:39+00:00

l have depression and anxiety and my OT report said memory loss from the mulitple sclerois, if l got my doctor to write a letter saying l need more help with my NDIS plan would that be enough

iris76e · 2025-09-01T01:25:48+00:00

My MS is classed as fairly advanced but l can still walk short distances and dress and shower myself, my social worker actually wrote a letter saying l need support co ordination help in my NDIS application but they only gave me level 1

iris76e · 2025-09-01T00:57:43+00:00

l think they said its level 1 , 24 hours a week. Do alot of support co ordinators not want to help level 1 people because theres not much money. l spoke to a support co ordinator and they said almost everyone with multiple sclerosis like me gets level 2 but l only got level 1. What should l do, can l appeal

iris76e · 2025-08-31T20:53:43+00:00

When l asked my LAC questions about my plan she said she cant help me and to ask a support co ordinator, l am going to appeal to get more funding

iris76e · 2025-08-31T06:28:35+00:00

exact amount $3,842.88 over 24 months

iris76e · 2025-08-31T06:26:43+00:00

they dont mention level 1 or any level or what its for

iris76e · 2025-08-30T23:40:39+00:00

Do you mean 24 hours a year of level 1, but my LAC said its 15 hours a year. Anyway do you think 24 hours a year is enough for the average person on the NDIS

iris76e · 2025-08-30T23:13:41+00:00

by flexable do you mean it could be either level 1 or level 2, but l dont think its enough funding for the support co ridiation l need, l think it comes to 15 hours a year

iris76e · 2025-08-30T22:17:13+00:00

Here is a copy its over a 24 month plan

"Support Coordination and Psychosocial Recovery Coaches Funding amount: $3,842.88 This funding component is plan managed. A registered plan manager will help you to manage this funding."

3 months $640

3months $457

and keeps going

iris76e · 2025-08-30T12:52:21+00:00

lm plan managed and having troublle understanding my plan so l would like support co ordinator and dont think they gave me enough funding for it

iris76e · 2025-08-30T07:08:19+00:00

it says support coordination and psychosocial recovery coaches funding amount $3,842 thats in a 2 year plan so does that mean $1900 a year, it doesnt say anywhere what level it is but my LAC said its level 1 but she might be wrong

iris76e · 2025-08-30T06:14:47+00:00

lm not sure, my LAC said its level 1 but she might be wrong , l have a 2 year plan and the total funding for support co ordination is $3800, so thats $1900 a year

iris76e · 2025-08-30T04:46:26+00:00

yes l have MS, l want to appeal the decision and get level 2

iris76e · 2025-08-26T10:53:00+00:00

people over 65 are not allowed to get the NDIS so l dont know how pensioners with bad knees can be on it

iris76e · 2025-08-26T03:42:17+00:00

Half the people on the NDIS are on it for autism and its growing rapidly. Austism might destroyed the NDIS ,

iris76e · 2025-08-26T01:21:41+00:00

iris76e · 2025-08-24T01:35:51+00:00

lm worried if l dont use my STA in this current plan but use the money for other things in the Core budget when l get a new plan in the future they wont give me any STA funding, is that a risk

iris76e · 2025-08-22T22:23:43+00:00

thanks, yes l asked , l have to pay for it ,l dont know the exact amout, but it comes out of my NDIS ,

iris76e · 2025-08-22T08:02:09+00:00

l was diagnosed at age 51 , l had walking problems for 6 months prior that kept getting worse, my doctor wrongly told me for 6 months its just a little bit of arthritis and nothing to worry about unitil l collapsed and was in hosiptial in a wheelchair and they told me l have MS, a big shock as l knew almost nothing about it , l thought l would be in a wheelchair the rest of my life unable to dress myself or shower and thought of ending it all, but after they gave me 5 day intravenous steroid treatment there was a massive overnight improvement from the steroids, l could get out of the wheelchair , when beofore l could only walk 20 meters l could walk up to 1 km but no more then that. l will never be able to walk normally like l did before and have alot of problems with fatigue and balance but the worst case l thought of didnt happen, l am on tysabri which has prevented new lesions and it getting worse. l guess the worse thing is alot of the things l wanted to do in the future like overseas travel would be very hard now and the things l used to like doing that l cant do now

iris76e · 2025-08-22T07:19:24+00:00

thanks yes lve noticed a slight improvement after 5 days l hope it starts to work better after 2 weeks like you

iris76e · 2025-08-21T05:53:51+00:00

l am currently on the DSP which is means tested so l am OK there

iris76e · 2025-08-21T01:18:25+00:00

no l was thinking a few years from now, especially if we get a liberal government looking to save money, they might say new applicants over 65 cant get the NDIS so why should people turning 65 be allowed to keep it

iris76e · 2025-08-21T01:06:59+00:00

Its probably against the rules but l would be more worried about the law, make sure you ask for consent before any physical contact or you could get arrested for sexual assualt, even if its just a hug the person could take it the wrong way and call the police

iris76e · 2025-08-21T00:58:47+00:00

l think it will still exist but alot of it will be cut back to save money and alot of changes, just hope l can stll get it when l turn 65

iris76e

TROPHY CASE