Erika`s procedure in Poland

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Jan 24, 2010 9:26 am

Hi Anna,
I think that e-mail is real. It is OK.
Erika

E_w_a · Post by **E_w_a** » Tue Jan 26, 2010 10:57 am

Hi, my name is Ewa, I don't spae english very well, and I dont understand everything, but I want to ask you, how did you walk before and how its now? plaese easy english.
Wish you the best

Asia · Post by **Asia** » Tue Jan 26, 2010 11:19 am

I can translate anything into Polish if it helps, Erika.

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Jan 26, 2010 11:21 am

E_w_a wrote:Hi, my name is Ewa, I don't spae english very well, and I dont understand everything, but I want to ask you, how did you walk before and how its now? plaese easy english.
Wish you the best

Hi Ewa,
Before: I was walking slowly and my legs were very weak, sometimes my legs made funny movements
Now: I walk faster, for the first 30 metres you do not notice I have MS, my legs are stronger

I hope it was easy English

Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Tue Jan 26, 2010 11:23 am

Asia wrote:I can translate anything into Polish if it helps, Erika.

Oh, you were faster. I think it was easy enough, well, I hope.
Ewa will tell us.
Erika

E_w_a · Post by **E_w_a** » Tue Jan 26, 2010 11:33 am

yes, i understood

, thanks for answer

ErikaSlovakia · Post by **ErikaSlovakia** » Mon Feb 01, 2010 1:39 am

My report after 3 months
Today is my day 90 after the procedure.

I feel little bit better, I walk better.

I still have problems with fatigue but not whole day. I usually do not feel my fatigue, it comes for an hour in the afternoon.
My vision is as bad as before the treatment. I started my PT but after my BP was 159/95 and my pulse was 123 and I had light fever for one day - only 37,2 C. Of course I had to take pills and stay in bed.
I am only 3 weeks after my symptoms of flu went away so maybe later my fatigue will be better again.
I still have my neuropathic pain in my right arm. I do not like the side affects of Carbamazepin. I stopped with IBT after 3 months because my spina bifida was killing me and I had problems to wake up and get up - it was after 10 am. I do not have headache in the morning and I can get up short after 8 am.
I am still weak.
I do not feel worse than before procedure for sure.
I am still dizzy and still feel drunk often. My balance is better for sure but still not OK. My coordination is something better but not OK for sure.
I still hate winter in my country just as before the procedure

I still have problems with my short term memory so I am sure I forgot many things so you will have to ask me

Erika

Pepe · Post by **Pepe** » Mon Feb 01, 2010 2:05 am

Hi Erika,

It is wonderful to know about your improvements! After all your hard work you deserve all of them!

Best wishes!
Pepe and María.

Dovechick · Post by **Dovechick** » Mon Feb 01, 2010 2:06 am

Sounds very positive to me Erika, I suppose you have been ill for a few years so it is bound to take time to make progress, but there are some notable improvements there...
I do hope that it continues for you and that when spring comes you will notice even more improvements
With Best Wishes
Michele
PS Ella is going in a couple of weeks, I am going too so will start a new thread about it shortly.

ErikaSlovakia · Post by **ErikaSlovakia** » Mon Feb 01, 2010 2:20 am

Oh yes, you can be sure it is positive even for me!
I am also aware my MS is at least 14 old girl and I have 12 attacks behind me.
I still think I won a lottery

It takes time for sure. I am also aware there are maybe some neuronal demages.
You can be more than SURE I will feel better in spring. Spring in my country is really beautiful!
Erika

ClaireParry · Post by **ClaireParry** » Mon Feb 01, 2010 4:51 am

This is good to hear Erika. I'm so pleased for you.

sunlounger · Post by **sunlounger** » Mon Feb 01, 2010 6:05 am

Hi Erika,

I am very happy to hear you doing so well after 3 month's

14 years of M.S behind you and 12 attacks wow

I hope you will have many further improvements
Thanks for being so honest with your updates

Looking forward to the spring

Zeureka · Post by **Zeureka** » Sat Feb 06, 2010 12:31 pm

Hi Erika!

That's wonderful to hear your improvements! Fatigue in the afternoon...yep, that's sthg I have also without intervention. And they always place my presentations after lunch at conferences which gives me a wonderful relaxing drunk side effect when present, haha!! I always wonder how people around me do not see the cloud that I am in!

Anyway, I'm just back from Brussels from a successful workshop (even with drunk presentation) and unfortunately disappointing meeting with my Belgian generalist. I could shoot him to the moon! He was really OUTRAGEOUS. Not only did he express CCSVI is all crap...but he told me when showed him my Simka diagnosis that 1 closed vein would not do anything to me, the other 3 will compensate!!! So forget it to ask him about anything else... In addition, before left he said it was outrageous that all his MS patients were suddenly coming to him to ask for this, and that the neurologist department of the St Luc hospital had done over 50 years of research and if they would have understood that this is right would already have analysed all their MS patients...oh yes, the Neurologists are gods!!!! In addition, he said what those that do the interventions do (= Simka) is unethical...go to hell!!

But then for me he went over the top when telling me why I would anyway complain, as I would be remitted according to the neurologist reports... for me that was the FULL end of my relationship with this doctor (who knows me since my childhood, sub

). When told him of my symptoms and also that MANY other people feel worse and logically want treatment immediately as there is a chance for improvements and stopping progression, he reacted, "well you know with MS you have to live with that..." How does he DARE to say sthg like that!!!!! ':x' He should be taken his license as a doctor for insane behaviour towards a patient with a serious illness! And I wish him to wake up one morning with all our symptoms together and live forever with those!!!!

Fortunately my generalist in Italy is supportive...he also supported me already all along in the starting phase of my MS, and was the only one that really tried to help me. I'm glad to have his support also for CCSVI. He said I had done brilliantly to go to Poland for the doppler.

And, on Monday, I will see what they say in Ferrara (I had to cancel last week due to snow and now go). At least it cannot be worse than my Brussels experience...

Looking forward to spring as well!

Stefanie

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Feb 06, 2010 12:42 pm

Oh, Zeureka, you do not have it easy with your GP.
I am happy with my GP and I am her only MS patient! She is willing to help me with the iron - Ferritin. I should have all result ready on Monday.
High Ferritin causes fatigue except for other problems so I am not surprised I still have problems with that.
It is true I have many MS problems but I am really happy I am able to exercise in hospital - I do not have to pay for it. The doctor there wants to help me as well.
I spent talking for 35 minutes on a phone today and after 3 hours in bed.
I will inform everybody on Monday but I go to exercise - it means whole afternoon in bed again. I hope to be OK in the evening.
Erika

Zeureka · Post by **Zeureka** » Sat Feb 06, 2010 12:56 pm

Wish you a good exercise and rest then

I also had a good siesta today. That helps a lot.

Have a lovely evening!
Steffi