Ella's adventures in Katowice

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby kc » Fri Feb 19, 2010 6:05 am

Thank you soooo much michele for updating us soo soon. How are
Ella's spirits? Is she cautiously optimistic?


This is wonderful, michele, I must say you are a wonderful mother. No other way to say it.

kc
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Postby mormiles » Fri Feb 19, 2010 1:42 pm

Ella, You have a great host of MSers and MSer lovers pulling for you, but relax. It's possible to make yourself so tense with expectation that you could miss the little signs. If you've ever done yoga, go there in your mind and chill out. What will come will come.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Cece » Fri Feb 19, 2010 3:39 pm

All my best to Ella...thank goodness that Simka does continue looking even invasively if that is what it takes to find the stenosis. It does add some information to know that, if she were in the Buffalo study, she'd have fallen into the 'no CCSVI' column.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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3 days post op

Postby Dovechick » Sun Feb 21, 2010 1:23 am

Sunday, Ella still waiting, but both Dan (her boyfriend) and I notice that she is walking more steadily. Like Joyce says, its the little signs you need to look for.
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.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby kc » Sun Feb 21, 2010 7:08 am

Michele,

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. :cry: But now I know ccsvi is our ticket. :D

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

kc :D
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post op

Postby Dovechick » Sun Feb 21, 2010 10:12 am

Brilliant KC, pleased that you are feeling so good.
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.
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Postby costumenastional » Sun Feb 21, 2010 11:15 pm

I am so sure she will get better in time... hang in there. I have an appointment for Bulgaria but i am afraid cause they surely dont have the expertise of Simka. I wish i could get tested by him. You were so lucky, mother AND daughter.

Now sit back and relax. Let the good things come ;)
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progress

Postby Dovechick » Mon Feb 22, 2010 12:20 am

HI CN,
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.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby costumenastional » Mon Feb 22, 2010 12:35 am

I totally get what you are saying. And i am with Ella 100% on this matter too. What s the reason to keep on living if you cant move a finger? Dont get me wrong, i am saying that I am NOT so tough. Others may well be. It's a matter of personality i guess...
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...
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GOOD LUCK ELLA

Postby INONU » Mon Feb 22, 2010 3:06 am

Dear Michelle
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 daughter ms'patient since 2001
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sad ms story

Postby jak7ham9 » Mon Feb 22, 2010 3:49 am

My mother's best friend daughter died of ms she was completely bed ridden and unable to move antyhing the last several year. she was only 40 at death imobo;ozed for at least 10 years.Stuck in a disgusting nursing home. Scares me to death.
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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Postby Cece » Mon Feb 22, 2010 6:34 am

While I hope to never be in that position, I have three children to watch grow up so all this talk of not wanting to live if I were very disabled is disturbing! Even if sidelined there is still joy that can be found in life.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ComfortablyNumb » Mon Feb 22, 2010 7:07 am

Michele,

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 :D
Stephen
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thanks

Postby Dovechick » Mon Feb 22, 2010 5:10 pm

Thank you all for your messages of support for Ella and myself. I have just returned home (1am 23rd Feb) having left Ella and Dan at Stansted airport with Dan's mother. I can't say that there is much to report on Ella's condition but to me there seems to be a togetherness that was missing before... It is early days, so we will have to be patient.
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.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby MSUK » Tue Feb 23, 2010 12:46 am

{{{{{{{{{{{{{{Michelle}}}}}}}}}}}}}}}}}}
MS-UK - http://www.ms-uk.org/
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