Knowing that there was a problem is a positive result, and it was thanks to Dr Simka's experience and knowledge that it was discovered. I think that his investigation was only slightly invasive in that she was injected with die so they could see what the blood was doing. Once they saw the problem then they went in and did the PTA.
Do you think that Ella is being very cautious about walking more steadily? Cautious meaning that there has been so many treatments in the past that have failed. Or it could really be that she doesn't really feel any differently.
I am so happy for her (and you). I really believe this is it. I remember when on abx I was having a good spell for a while and you wanted me to post and say this was it, but I couldn't because deep down inside I knew it wasn't. But now I know ccsvi is our ticket.
P>S I have been sleeping inclined for over 2 months now and I am a diff person. I even went to the 7pm movies last night after a full day and enjoyed it without fatigue! First time in over 12 or so years.
keep us updated
There are little signs that Ella is making progress... her thread vein is less angry, she sat in the pictures for 3 hours without needing the toilet, her skin in clear on her face, her tremor seems quieter to me... Not sure that she feels the same though... we just have to wait.
Yes I know we were so lucky. But I have come to realise that you make your own luck. I have been criticised in the past by Ella, my family and friends, for not aacepting the fact that she had MS and that there was nothing to do about it. But I could not, would not? Too stubborn, too much to loose, including my daughter who is not the kind of person who is likely to want to go on living when she had to rely on others to do everything for her. In the same ward as Ella in the hospital there was such a young woman, probably a bit older than Ella but certainly no more than 35, she could not move or talk, the only thing I saw her do by herself is cry... Her parents took care of her the best they could but it was like seeing a sack of potatoes being handled... Heart breaking... So what choice did I have? I had to keep looking and asking questions... And in the end I was rewarded...
So now we wait with hope, not despair.
And I commend you and another of my friends in the UK who is going to Bulgaria, for taking a leap in the dark and being one of the first to go to Bulgaria.
I'll be thinking of you and waiting with anticipation to hear how you get on.
You did the best you could for Ella that is for sure. And God should reward you along with everyone else who is fighting this dreadful disease.
The girl you described... i just dont understand how things like that can happen to young people...
I would go to Poland if i had the chance, but Sofia may turn the next best option in Europe. It s something i cant pass. I think they will be able to diagnose ccsvi since they seem to organise this is a such good hospital and under a very good doctor's directions.
Only time will tell, like it happens with everything else...
I am a father and my daughter suffering MS like Ella , so what I can say you, just pray and believe in our "Carma".I get appointment for Polond and for Bulgaria too, so I wait and try to think for the best place toget her treated. Be lucky and all my friendly thinks to Ella.God bless you.INONU
My father his mother and her mother all had ms symptoms , My father mostly imbalance numbness in hands. the women were much more difficultly mobility issues. I do feel this is genetic component, My biggest symtoms tightness and mobility )legs). I do not not believe any pf us have eye issues. My mother would do anything for me. i am scared for my daughter and son. Are they going to develop symptoms? I already was positive for stenosis via doppler and mrv. I am on all the lists. 2 poland, albany, georgetown, standford but no appt yet. I truly hope ella gets great improvements. Barbara
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- Location: Ontario, Canada
I think you are truly amazing. Your strength of determination is what we all need and I applaud all you have done fo Ella. Always keep the faith. We all appreciate the efforts you have taken for Ella and also in keeping us all informed with her progress throughout your journey.
My thought are with Ella and you for her continued improvment.
All the best
Upon coming back home and needing to unwind I find myself evaluating the past three months, and I must say they have been the most amazing months of my life. Not only did the concept of CCSVI come as a complete surprise which immediately made sense to me, but the prospect of organising and travelling to Poland with my daughter would never have crossed my mind either. Looking back it is an amazing adverture that I would not have considered myself capable of. I'm a bit of a home bird and have never considered travel something to enjoy. But there you are: a parent will do anything for their child, no matter how old they are.