Thanks everyone for your replies.

The first GP I went to sent me straight back to work, where things went downhill, so I saw another GP who sent me to an Occupational Physician. The Occupational Physician did not even touch me, just looked at my range of motion, and said I should go back to work!

My physio and GP were both horrified, and gave me longer off work. In the meantime a Rehabilitation Provider had been put on my case, and when I described to her how I was feeling - she immediately rang my employers insurers, and they okayed paying for an MRI. Shock, horror!

So when I went back to my GP with my Rehab Provider, the first words out of my GP's mouth were - "we need to get you in to see a Neurologist and have an MRI."

Well because it had already been organised by my Rehab Provider, they will wait to see the result of the MRI before referring me to a Neurologist.

So almost 6 weeks on, I'm still wondering what is going on. The way my symptoms come and go is strange though. Unfortunately the burning on my face isnt going

8 more days until my MRI and I find out whether I am imagining things or not!!

good reading hysterically funny roflmao lol

i like this.

Remind me not to become a curry taster.

Hi Dizzylizzy,

That's great that you had such a good result but this isn't what the original post was really all about (Another post on DSP was originally posted but closed now and this one opened).

It's about constantly having to be reviewed every 2 years for full DSP and being assessed for job capacity where it is in fact that person who decides what you can and can't do. These are the issues. You're situation is different as you are working part-time. Yes, to qualify you are seen by a doctor through HSA but this is the reviews from then on. The first one is 2 years after you first apply, and then it can become random after that within 2 year periods.

In the review forms it's all about whether you are basically better or will you improve over the next 2 years. This is fine for people who are temporarily incapacitated for maybe accidents, mental illness, or other illnesses where in fact you can get better through medical care, but with MS, we don't get better. We have some good days and bad days but as this disease progresses you realise how much impact it takes on you. It's hard enough trying to cope with not having the same functions as what you'd like, not having the energy to do all the things you need to do just to look after yourself and your home, let alone have to be reviewed every 2 years or less to see if you're better!!

I think I can safely say for most of us, if not all of us, that we would love to have the ability to do what we used to be able to do but simply can't anymore. I know I personally kept on and on trying to get back to where I was but each time had further relapses and more damage. Stress plays are large role in excerbating our already unpredictable disease, and Centrelink with these news rules are placing further undue stress on people with MS.

I think Centrelink's role should be to provide us, the ones who feel they can work or do more, with support to find suitable flexible roles close to our places of residence. Ensure that these work places understand the issues we face with MS so that people are not put under further stress by trying to work and having pressure from the workplace because of absences due to MS etc;. We should not be forced into any situations, it should clearly be OUR choice as to whether we feel we can, and also our neurologists advice as well.

I know my neuro thinks it's outrageous with what Centrelink are requiring us to do, but it isn't our neurologists or doctors who decide whether we get job assessed after these reviews, it's Centrelink employees. I personally have a close friend who works in this field. They are placed on targets for placing people in work each month, and most do not know anything about MS, so if you're not in a wheelchair or using a walker, they could perceive you are being fine, just like most of the general public do but they have no idea what fatigue you suffer, what cognitive problems and also other neurological problems that we suffer from - hidden symptoms as Dr Garry Pearce from the MS Society called them.

The MS Society tried to battle this new ruling a few years ago but nothing happened. They had said that it was unfair because MS was so unpredictible and that we should not be subjected to this. Our disease does not get better, it only gets worse, so why do we have to continually be reviewed to see if we are elegible for a pension?

On another note: Darin, I will try and get my MS brain to function for writing a letter after I meet with my Federal Member of Parliament next week. My letter writing skills are not what they used to be, that's for sure but I'll see how I go.

Being a curry eater, yes it is very funny lol.

Welcome fellow traveller in the (not so marvellous or magical) mytery tour that is MS.

I have to say now- your written words are a marvel and a delight! Maybe...you should think of writing a book, NOW, before the next lap of the journey has a chance to diminish that gift.

I would certainly read it.

On the subject of friends - I have few. Mostly (I have since found) my fatigue has been confused with apathy or anger. And at my worst I was not fit company even for myself.

Family.....mine has problems accepting my disability. Mind you, they still have problems accepting that I consider my stepkids children as grandchildren - I guess it makes them feel old? Mostly now I find large and noisy gatherings too too much, and my male siblings too toxic to spend time with unless it is absolutely neccessary.

I was always the mini-mother, the nurturer, and the person I have had to become is a stranger to them. Ah well- there is always the PC to maintain touch with others, and so much the better if they have travelled some of the same strange paths.

Hi guys, as a separate approach, I have noticed that the MS Society as represented by Multiple Solutions aims to keep members in paid employment wherever possible. This is a worthy goal.

Sometimes it isn't possible - my once place of employment needed their type A overachiever back but that part of me no longer existed - it was taking all the energy I had once used in the workplace to function at a very basic level. I did try, constantly on the verge of swooning away with fatigue whilst trying to mentor my team mates.

Centrelink-and eventually my workplace- did come to understand that my flexibility was seriously undermined, to an extent that made it impossible for me to function at the level for which my experience and training should have suited me- or even well below it :(

Might I suggest that what we need is an advocate - someone capable of stating our plight in such a way as it is easier for the non-MS sufferer to understand.

In my particular situation, physically I am doing fairly well. Most days I can use my own two feet, ocassionally I need my walker, but some days I need to use my gopher. My hands vary from numb to very lightly buzzy. Mentally, my focus needs to change frequently - my explanation to myself is that each thing I do uses different circuits - spend too long on one task and the circuit for that task overheats and must be rested. Push it- and the whole lot overheats and I crash. Change tasks and I last longer.

At the moment I do not think the Society has the neccessary resources to both protect the rights and prospects of the employed members and to ensure that the conditions of each of the non-working members are fully understood and documented to make their battles with bureaucracy easier.

The CMO accepted that in my particular situation there was unlikely a paid position in existence that could be flexible enough to get value for the employer's dollar. Most employers expect their employees to be flexible and capable of consistent sustained effort in strenuous mental and/or physical tasks.

I just cannot.

My once almost eidetic memory has diminished - there is a black hole that my memory vacations in, and a lot of my mathematical and language skills never came back. Somehow the CMO understood what I wanted to say and accepted it.

For many of us - that ability to understand may not meet our attempt to convey what it is like with MS - the often unique way it affects our thinking,stamina, co-ordination etc.

BUT - if we had the services of someone sympatico (and able to convey what we would wish to say on our behalf) it could achieve much.

actually, in my case Centrelink were absolutely marvellous!

Do apply. I was still trying to work when I sought help as I had been on the verge of losing my home for months due to the chronic fatigue aspect. My supervisor had put me on a 'graduated return to work'- she seemed to be of the opinion that I could just snap out of it if I were pushed enough. After all, we had a Tourette's person, a hearing impaired person and a guy with mobility problems in our team, who were all successfully meeting the challenges.

The CMO for Centrelink looked at my reports, read the test results for the quizzes and tasks directed by HSA, and spoke to me fairly briefly. Much to my enormous surprise he had no problem accepting the report from my neurologist.....and not only was I approved as a dsp part pension recipient, but my benefit was paid back to the date my 'graduated return to work' commenced.

By that time I was really too exhausted to really appreciate what that all meant - I crashed for a couple of days.

If you have a report from a neurologist that makes it clear that you have been diagnosed with MS, with the attendant fatigue problems you shouldn't be very concerned that your problems will be discounted. The interviewing staff member will not be the person who decides your future. If your neurologist has not comitted definitely to stating that you are unlikely to be able to gain or retain renumerative employment you may be obliged to undergo some tests through Heath Services Australia in order for a determination to be made.

As Centrelink are obliged under law to employ a certain percentage of 'challenged' persons you will probably find them rather more supportive than you expect.

Welcome to OzMS Liz.

There are a lot of pointers to MS but as Darren said it could also point to a whole load of other neurological conditions. Hopefully if you can get referred for the MRI then it might shed some more light on the subject. There's nothing worse than going through all this suffering without any answers.

Good luck with everything and keep us informed of how things go.

Gill

Hey! I can do the ears!