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any advice gratefully received

Hi all

I am new to this forum but hope some one can help as i am in quite a desperate situation.

I have had rrms for nearly 14 years but wasnt diagnosed until 2003. Up until 2008 i would have an attack every 2 years and until last year it was once a year. In May 2010 my then 6 year old son was diagnosed with a brain tumour and finished treatment a year ago and is now in remission. I am a single mum and went through most of it alone. Obviously this was extremely stressful for me and last summer i had one attack on top of another. Luckily none were disabling but i still have left over symptoms from one of them.

In January of this this year i decided to try working again part time (i am a veterinary nurse).I have found going back to work extremely difficult and have found the job very stressful. Unfortunately since then i have had 3 attacks and am still suffering symptoms from the last one e.g numb left leg and pain in left eye.I had an mri a couple of months ago and i was shocked to find out i have 7 active lessions!

I have been told i need to start treatment, probably Natalizumab. I have not told my work that i have ms and have never needed to before as my ms has never been this bad. I am still on a probation period at work and i really don’t know what to do. If there was any way i could get financial help i would quit tomorrow but i know this would probably be impossible. I am worried about what the reaction would be if i tell them at work and because of this i am worried about starting any treatment.

I really dont know which way to turn. Help??

So sorry to hear this - l think you will have to ‘come clean’ with your employers - and don’t forget to tell the DVLA and your car insurers if you drive. lf you had an accident they could refuse to pay out. l am sure your employers will be understanding - l know my vet talks more to me about recent research into ms then any of the GP/neuros l have seen. Hopefully, the dmd they are putting you on will be successful.

To find out what benefits you can get to help if you did have to give up work - its worth joining benefitsandwork site. Some are not means tested - so you might still be able to perhaps go part-time. No one wants to have to give up work - l think we need to keep going as normal as possible.

Do hope your son is still keeping well - my OH had a brain tumour 7yrs ago. At one time he could not do anything for himself - now he is ‘managing’ quite well - apart from getting steroid induced type 1 diabetes from his treatment - he now goes to the swimming baths TWICE a day and does 50 lengths a time.

Life really has been putting you through the wringer.

Unfortunately your MS has changed up a gear or two. Your policy of not telling work about your MS has worked well before, but you need to review that in the light of changed circs, I think. Obviously it is particularly difficult with the probationary stuff etc, but I don’t think you have much choice. Apart from anything else, if you do go on Tysabri, that is going to be one half day a month you will be unavailable for work. The good news is that Tysabri does offer the real prospect of stopping your MS in its tracks. The law will not permit them to not make you permanent just because you have an MS dx, by the way, but you probably know that already.

I am sorry that you are having such a worrying time after all the difficulties you have faced already. FIngers crossed that you get your MS back under control quickly and can get on with your life again.

Alison

Hi

I’m so sorry to hear your story. You’ve had such a lot to cope with these past few years and on your own too. You sound like a very strong person and I am sure you will find a way through this latest minefield too.

I agree that you need to tell your employer. You clearly need the medication as it is time you looked after YOU now and you need to put your health first for a while. Hopefully they will be very understanding - after all, isn’t a vet supposed to be caring ;-)? I’m sure you have already proved your worth as an employee and I hope they can see the bigger picture here. They would also have to be fairly heartless not to be moved by your personal story.

I think you also need to look into what extra help you can get. Every local branch of the MS Society has an Welfare Support Adviser that can help with this. Have you looked into whether you are eligible for Working Tax Credit also? I work 32 hours pw and claim it (I’m single and my son is now independent). You could even ask CAB for advice with this. Apparently the government save millions every year because people don’t claim what they are entitled to. Don’t give them the satisfaction!!

Finally, good health and good luck to you and your son. I really hope you go for the treatment and it works for you. Do it for his sake :heart:

Take care

Tracey xx

I lost my job