Crap – not getting treatment for my MS

OMG I receive an email from India that the Manipal Hospital – Bangalore are not accepting any cases for Stem cell treatment towards Multiple Sclerosis from immediate effect. This is as per discussion with the scientific committee.

Including me!! WTF!! 

I will not be getting treatment for my MS…well in the few months anyway.

I had planned to fly out first thing in June. I had made significant perpetrations for the journey, paid for all three airline tickets (mum, husband and myself), resigned from my job and gained the required Visa’s for my treatment. I am now left with no treatment options.

This decision could have not been worse been so close to my agreed start date for HSCT at Manipal hospital.

It feels like I was jumped by faceless thugs, kicked over and over in the gut and still feel winded. As you can tell I am left deeply distressed…well frankin pissed off!

Just to rub salt into the wound further, my tests for the progressive multifocal leukoencephalopathy (PML) returned positive that means I am at risk of the nasty JC virus which affects heaps symptoms include:

  • Abrupt or significant personality changes
  • Recent or sudden change in cognitive behaviour
  • Unusual difficulty with speech
  • Other physical changes

Currently no known treatment, prevention or cure for PML.

So I will be applying for treatment in other overseas hospitals keep watching for my progress

Love Irene

4 thoughts on “Crap – not getting treatment for my MS

  1. this is bad, im sorry but there is hope as the Greeks say “καθε εμποδιο για καλο” meaning every hurdle for the best. love you Eirini you are amazing and cute too xxx love θεια Yianna

  2. So sorry to read your disappointing news. Regarding your +PML labs, can you tell me what/if DMD you take? Praying for good acceptance at another facility! 🙂

  3. So sorry to read this news Irene. Please don’t give up. Can I suggest trying even to push through with dr Moore at st Vincent’s. Perhaps a visit to Dr Andrews to get the referral

    1. Thanks everyone, I already contacted Dr Andrews and have an appointment to get a referral to Dr Moore…as I’ve been down this path many times I’m setting up plan B, C & D overseas options. I’ll never give. I might have a Pandora box but in that box there is still hope

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