This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
elaine wrote:That's great news nico, i was wondering if Proff T would be able to re balloon if need be.
I know you mentioned he comes back from os mid May but do you know when he leaves?
Another question do i just wait four weeks then re book appointment with Julie and the Proff?
cheers Elaine
hi Elaine,
Prof T didn't say but l had a good conversation with Jan and l believe she mentioned end of April.
As for your second question, it would be best if u asked Jan/Prof T - l'm honestly not the least bit qualified to advise. Prof T had told me when to book a follow-up when he visited me after completing my procedure.
Thanks Nico
i will give them a ring and find out, the Proff did come to see me after the procedure but i had such a big headache, that i don't think i took anything in.
I also have been keeping a diary i will be more than happy to hand over to the Proff if this can help in anyway.He is an amazing man i just wish i could think of a way that we could show him how much he means to us all.
Val that's great news are you back in sunny Qld yet?
Elaine
nico wrote:the absolute best thing we can do now is provide prof T with the ammunition he needs to present to the hospital upon his return from o/s mid-May. by ammunition, l mean a documented diary/list of improvements you've noticed. only in that way can he present an undeniable and iron-clad case. for those of us with CCSVI and MS, it's the least we can do.
I have yet to see prof T and therefore have not had any treatment. But my plan is to schedule an appointment with my regular MS Neuro for a full run down of my condition (EDSS, QOL, PSAT etc etc etc) as a record of my before condition; if he deems treatment possibly required. I think two patient records from a respected neurologist will present even better.
I will wait till my initial consult to discuss with him.
Elaine yes I flew back wed. morning. and it isn't sunny we are gonna have rain for 4 days. I am so glad everyone is doing so well and Proff is a wonderful caring man I was very impressed with him he is so down to earth and easy to talk to
Val
So I'm just over 4 weeks out from my procedure, time for an update.
My 'bad' hand is about the same, it mostly opens well, occasionally I can stretch it out fully, but I've also had two days when it regressed to pre-procedure (but is ok now!! can't figure what happened). My arms are stronger and can lift a lot higher than before. The feeling in my 'good' thumb and index finger have returned to normal. Still sleeping better, energy better, less fatigue, (no afternoon naps have been required!!).
My headaches have completely changed their pattern, from almost every day and getting worse as the day progressed, pre-procedure, to now having a slight pain in my head every 4-5 days not getting any worse and sometimes disappearing within the hour.
Only bad news is that I had a small fall at home 3 weeks ago and I managed to tear a ligament on the outside of the knee joint. Painful and couldn't walk, but is much better now, so I can't say how my walking is right now!!
Remembering I'm PPMS (sorry to keep stating that, but newbies might mistake my slow progress as lack of progress). I've certainly not got any worse, but I think that it's way too early to draw conclusions. I do feel better (placebo???), everything seems a little easier, so I'm happy with that for the time being!!
Not sure who is next on the list, but good luck anyway. I know Seeva is the following week and we'll look forward to their report.
Heard some time ago that a doctor planned to open a clinic at Bondi Junciton in April specifically for CCVI screening and treatment.
Does anyone have info on this? Has anyone been there?
I went to a walk in clinic at Bondi Junction when I had my first introduction to ms, by way of optic neuritis. Got great care from an ophthalmologist, then 2 neurologists.
I live in Canada, but have a second home, (well ok, it's my friend's couch), in Sydney, so might prefer to go south for treatment rather than wait my turn (March 2022) for Poland.
Things are moving very slowly here in Canada despite the recent media interest.
ON May 5th. We will have some protests across the country demanding screening and treatment be made available. At the MS Society walks we will hand out info sheets. Many of us are meeting with and writing politicians. WE will not give up!!
In the meantime, I would like to get assessed and treated, so wonder if Aus. is an option.
