16 more days until I go to India with my dad. I am looking forward to not feeling like I am walking on a balancing beam constantly, amongst other things.
after much thought and stress I will not be recieving IVF treatment before I go for HSCT which means I won’t be able to have children later in life. I have to be at peace with this and see the silver lining..
I was just trying to explain my mobility to someone who messages me on facebook. Also if the ground isn’t perfectly flat it’s much harder to walk.
i am looking forward to the ‘brain fog’ and cognitive issues clearing as my iq has definitely lowered.
i will fly out on the 26th of November and begin treatment on the 28th.
Rest in peace to Ella who lost her life during HSCT India. The first HSCT for MS fatality at Manipal Hospital where I’ll be going.
my exact date for India is December 5th.
now I have to organise the money side of things, visas, vaccinations, hotels, flights. for 4 people, as I have to have 3 different carers, each coming for a month at a time.
some approx figures not including 40KUSD for the actual treatment.. about 500 each for vaccinations, around 7000 for hotel and 186 each for vaccinations.
im still trying to claim my income insurance but it’s much too stressful for me. my cognitive problems make me get very overwhelmed and stressed easily. I need someone to advocate for me and help but no one will/can. also because I sleep so much it’s slowing down the process as well.
I’ll be able to do things in India for the first few weeks before chemo makes my immune system fragile/I go into isolation. In saying that, I physically cannot do much however im planning to go to a fish spa/day spa for some relaxing, eat some fancy foods, go to the zoo and go to a Buddhist temple. ill just rest heaps at the zoo & shopping centre. whilst it’s not a holiday, it would be silly not to explore & will be good for my state of mind.
tonight i feel quite disheartened as i just learned I’m a 5 or 5.5 EDSS.
It stands for Expanded Disability Status Scale. this is depressing as im only 25 & whilst HSCT stops anymore progression, how much it will reverse is unknown. after HSCT has done its thing (1+ years later) i will still be able to (mentally) deal with what may seem like a severe disability to others, considering what i deal with at the moment. however the scale is from 1 – 10 with 10 being death from MS. so basically, im a very sick girl.
about a month or so ago my left leg progressed more and I can barely lift it now. left leg seems to be the only thing deteriorating that i can notice but it affects my walking in a big way.
i hope that one day i won’t need to smile at sales assistants when they mention my ‘sore foot’ due to me walking like an idiot.
I will post the EDSS chart below for anyone who is interested. FS stands for functioning system.
sorry if this post has been too negative.
i forgot to mention sometimes MS reversal can be 2 or 3 points but I’m not really sure and there’s no guide set in concrete.
also please if you are in Australia especially, keep in mind 8 – 10 is the 40 something year olds or younger men and women who are currently in our aged care system even though they aren’t elderly. barely middle age and paralysed. their minds are young but their bodies are doctors have failed them. if i don’t do HSCT i personally think id be in a nursing home next year. although you can guarantee I would be by the time I’m 30.
I am pointing this out because we all need to support Young Care Ausyralia and get young Australians into appropriate care. And also because the neurologists are sitting by and letting us become paralysed, giving us useless drugs, over priced drugs & choosing money over our quality of life.
No disability, minimal signs in one FS
1.5 No disability, minimal signs in more than one FS
2.0 Minimal disability in one FS
2.5 Mild disability in one FS or minimal disability in two FS
3.0 Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5 Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0 Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5 Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0 Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5 Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0 Requires a walking aid – cane, crutch, etc – to walk about 100m with or without resting
6.5 Requires two walking aids – pair of canes, crutches, etc – to walk about 20m without resting
7.0 Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5 Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but can not carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0 Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5 Essentially restricted to bed much of day. Has some effective use of arms retains some self care functions
9.0 Confined to bed. Can still communicate and eat
9.5 Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0 Death due to MS
Everyone that has been diagnised with MS on the HSCT forum has a very sincere and kind heart.
i will be going to India for treatment in the first week of December, just waiting on an exact date.
today i noticed a significant loss of use/movement in my left leg compared to yesterday. it’s a bit useless it is paralysing fast.
im currently trying to find out how to find a carer to take overseas with me.
I just added a little update on my fundraising page.
today I got accepted for HSCT in India. I have no other details yet. I also started a new nerve pain relief drug called lyrica which I’m hoping will work good.
when I told my neuro months ago about
my breathing problems she said I hadn’t progressed enough to have breathing problems. she told me it was a virus. highly offensive.
anyway I have been having blood pressure problems and I just read both breathing problems and blood pressure problems are due to legions on the brain stem. which is really bad but makes things makes sense a bit.