sorry to hear Erika
maybe, its better to have it all in Dr. Simka's hands????????????
i'm there the 24th and have a few questions myself, i hope he's open to them. i know back here, i can't imagine if anything went wrong, but i'm seeing my dr. friday, so we'll see.
best wishes
Erika`s procedure in Poland
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ErikaSlovakia
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Well, he does not own any MRI machine. It is "funny" to go for an MRI of brain to Poland and pay for it. Slovakia has enough MRI machines for this.esta wrote:sorry to hear Erika
maybe, its better to have it all in Dr. Simka's hands????????????
i'm there the 24th and have a few questions myself, i hope he's open to them. i know back here, i can't imagine if anything went wrong, but i'm seeing my dr. friday, so we'll see.
best wishes
Do not forget it is a real luxury for me to go to Poland.
I mean, it is a financial problem as well.
I knew this might happen. I am not in any study in Slovakia, I am not on DMDs, so it is not easy to have an MRI. That`s life...
I just hope he finds something out and he will have an idea how to fix my blood flow.
I wish us LUCK!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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ErikaSlovakia
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10 months after my procedure in Poland
10 months after my procedure in Poland
Except one thing I still have the same symptoms as before my procedure.
My nerve pain in my right arm is gone since 8 months after my procedure. My pain started in 2005. I started with 1200 mg of Carbamazepin. Now I do not take any.
I only started to feel some pain 3 days ago. We had big weather change. But it is not necessary to take Carbamazepin. As I must save some money for my follow-up trip I stopped taking Teavigo.
Was it Teavigo (EGCG) or the procedure helping my nerve pain? Or is it only the weather? Do not know...
My fatigue was better only the first 33 days. I must say that I did not go out that time, I had some short breaks lying down in my bed and my only activity was replying many patients.
Was it maybe the "easy life" and cold weather giving me more energy? Do not know...My BP went lower (90/60) the day 34. I do not know why. I also had herpes twice in December 2009 on my lips and flu (or it was just a cold?). However I had no temperature.
I do not have any new symptoms, I have not had any attack, nothing is worse. I am still on LDN. I can be sure DMDs do not help me because I have never been on any.
I still walk with one cane. I especially do not like my fatigue, sleepiness, dizziness and brain fog. Summer is over. I have had the same problems with heat as last year.
Last time I promised not to do any more experiments. I am very often with my 10 year old nephew - he is my best friend. I teach him English and German, we play cards, ... I wanted him to have some fun so we went to ride a bike. I ended up on a ground - nothing serious happened just some little bruises. I really would like to come in one piece
to my follow-up with Dr. Simka so I concentrate on not killing myself
Erika
Except one thing I still have the same symptoms as before my procedure.
My nerve pain in my right arm is gone since 8 months after my procedure. My pain started in 2005. I started with 1200 mg of Carbamazepin. Now I do not take any.
I only started to feel some pain 3 days ago. We had big weather change. But it is not necessary to take Carbamazepin. As I must save some money for my follow-up trip I stopped taking Teavigo.
Was it Teavigo (EGCG) or the procedure helping my nerve pain? Or is it only the weather? Do not know...
My fatigue was better only the first 33 days. I must say that I did not go out that time, I had some short breaks lying down in my bed and my only activity was replying many patients.
Was it maybe the "easy life" and cold weather giving me more energy? Do not know...My BP went lower (90/60) the day 34. I do not know why. I also had herpes twice in December 2009 on my lips and flu (or it was just a cold?). However I had no temperature.
I do not have any new symptoms, I have not had any attack, nothing is worse. I am still on LDN. I can be sure DMDs do not help me because I have never been on any.
I still walk with one cane. I especially do not like my fatigue, sleepiness, dizziness and brain fog. Summer is over. I have had the same problems with heat as last year.
Last time I promised not to do any more experiments. I am very often with my 10 year old nephew - he is my best friend. I teach him English and German, we play cards, ... I wanted him to have some fun so we went to ride a bike. I ended up on a ground - nothing serious happened just some little bruises. I really would like to come in one piece
to my follow-up with Dr. Simka so I concentrate on not killing myself Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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ozarkcanoer
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Hi Erika... What fun to teach your nephew English and German. He will be a very smart boy when he grows up !! You were an early pioneer. I wish with all my heart that you had better results. On August 17 in Baltimore Maryland I had a stent put in both my right IJV and my left IJV. So far I have not felt any improvements but my symptoms, except for my double vision, are pain and fatigue. I have read about people getting help with fatigue so I was hoping very much the fatigue would be better. Someday I hope that you and I will discover why. I do not regret a thing. I'm still watching the CCSVI story and your story is still one of the best. (((Erika)))
ozarkcanoer
ozarkcanoer
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ErikaSlovakia
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Hi there!
It is almost midnight here. I am scared to go to sleep because I fainted this morning. When I "woke up" after couple of seconds I was very hot and started to breathe really fast. I was on a floor - good thing was that the tiles were cold. As I also have tetania I got a tetanic attack because of the fast breathing.
Do not get scared this is nothing new to me. I have this since I was 10 years old.
My mornigs are really bad. It takes me very long time until I wake up and until I get up.
I often have the feeling I am going to faint but at the end I faint only rarely.
I go to the symposium in Slovakia soon. I am so worried because I must get up before 5 am. I hope not to faint because it is my only bus.
I had the same worries when I was traveling to Poland but at the end I managed so I must manage this time as well.
Anyway, nobody can do it instead of me.
My "normal" time to get up is after 10 am. I do not understand anymore how I could wake up and get up at 7 am after my procedure in Poland. I remember I even washed my long hair that morning and I went for a coffee.
To be honest I really prefer to have the procedure every day.
Oh, what a mystery
I feel better in the evening. Even after taking the sleeping pill. Like now, I took it 2 hours ago.
OK, I go to watch TV
Erika
It is almost midnight here. I am scared to go to sleep because I fainted this morning. When I "woke up" after couple of seconds I was very hot and started to breathe really fast. I was on a floor - good thing was that the tiles were cold. As I also have tetania I got a tetanic attack because of the fast breathing.
Do not get scared this is nothing new to me. I have this since I was 10 years old.
My mornigs are really bad. It takes me very long time until I wake up and until I get up.
I often have the feeling I am going to faint but at the end I faint only rarely.
I go to the symposium in Slovakia soon. I am so worried because I must get up before 5 am. I hope not to faint because it is my only bus.
I had the same worries when I was traveling to Poland but at the end I managed so I must manage this time as well.
Anyway, nobody can do it instead of me.
My "normal" time to get up is after 10 am. I do not understand anymore how I could wake up and get up at 7 am after my procedure in Poland. I remember I even washed my long hair that morning and I went for a coffee.
To be honest I really prefer to have the procedure every day.
Oh, what a mystery
I feel better in the evening. Even after taking the sleeping pill. Like now, I took it 2 hours ago.
OK, I go to watch TV
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
Erika take care...for s.o. not knowing sounds scary, but seems you have it under control...anyway: halt die Ohren steif! I'm thinking about you often. The symposium in Slovakia that's great news! Lets hope everything will work out for you as planned.
Tomorrow morning have appointment in hospital for check-up with my neuro. Not really looking forward to it, but lets see what he says...will not tell about my intervention...Buona notte...
Back from my neuro in Rimini hospital (nothing has changed...): his comment on CCSVI: "Heard about that yes...but nothing will come out from that. The first results were not good..." when asked whether he referred to the Swedish/German study and that the study group really small + that there will be further results in US etc...he just nodded and said, well that's my opinion and lets see those study results then, but in my view...
So still: judgements made upon ignorance and lack of interest in the topic!
Tomorrow morning have appointment in hospital for check-up with my neuro. Not really looking forward to it, but lets see what he says...will not tell about my intervention...Buona notte...
Back from my neuro in Rimini hospital (nothing has changed...): his comment on CCSVI: "Heard about that yes...but nothing will come out from that. The first results were not good..." when asked whether he referred to the Swedish/German study and that the study group really small + that there will be further results in US etc...he just nodded and said, well that's my opinion and lets see those study results then, but in my view...
So still: judgements made upon ignorance and lack of interest in the topic!
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ErikaSlovakia
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Little update.
Well, it looks my nerve pain is coming back. I am on 450 mg a day these days.
I do not have it completely under control because I do not know exactly what time to take Carbamazepin and how much.
At least there is some help.
Otherwise nothing new: I am still fatigued, sleepy, headache...
It looks I will make it to High Tatras (Slovakia) to the Symposium to meet Dr. Simka next week.
Erika
Well, it looks my nerve pain is coming back. I am on 450 mg a day these days.
I do not have it completely under control because I do not know exactly what time to take Carbamazepin and how much.
At least there is some help.
Otherwise nothing new: I am still fatigued, sleepy, headache...
It looks I will make it to High Tatras (Slovakia) to the Symposium to meet Dr. Simka next week.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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costumenastional
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ErikaSlovakia
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I will be trying to find out more. I promise.costumenastional wrote:Sorry to hear that Erika.
Hang in there friend. Hopefully you ll get some valuable new info from Simka and share with us all. Thanks for your effort.
Have a nice trip.
I do not expect any news from Dr. Simka now.
I just wish I had some more energy. My arms have been so weak. I am very sleepy even now. I go to bed again.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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ErikaSlovakia
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- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
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Hi Daniel!daniel wrote:Erika, I hope Dr Simka will be able to help you soon and that you'll have a speedy recovery, god knows you deserve it!
Thank you!
I do not think he has some solution for me now. Maybe later. We do not know. It looks there is something else regarding MS.
However I am very happy that many patients have improvements.
The job is still not done.
I really do not mind I walk with a stick but I really hate my fatigue and I really hate that I am so sleepy so often.
Well I hope we can treat this in couple of years.
Thank you again!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
Re: Erika`s procedure in Poland
HI Erica congratulations!! regards seevaErikaSlovakia wrote:Hi!
I am very happy and I am very lucky! :D :D :D :D :D :D
I had me procedure in Katowice - Poland yesterday. I got one stent. I did not have any pain. I do not have any problems. I go to the hotel today and I travel home tomorrow.
more info later.
Erika
:roll:
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ErikaSlovakia
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Re: Erika`s procedure in Poland
Thank you Seeva, but this was last year in November.seeva wrote:HI Erica congratulations!! regards seevaErikaSlovakia wrote:Hi!
I am very happy and I am very lucky!
I had me procedure in Katowice - Poland yesterday. I got one stent. I did not have any pain. I do not have any problems. I go to the hotel today and I travel home tomorrow.
more info later.
Erika
I had my procedure November 3, 2009 in Katowice and I asked next morning a nurse to use her PC to be able to send this message.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
re erica's CCSVI INPOLAND
HI ereca thaks for your reply
regards
seeva :oops:
regards
seeva :oops:
Hi Erika, very sorry for you that you still have this awful fatigue...I just got an gastrointestinal virus and not feeling well at all...but fortunately generally my fatigue much better. Next week Tuesday will see Dr Beelen in Belgium for a doppler check (to ensure no restenosis). Lets see what he will tell me. I saw in the Dutch Forum that many patients of Dr Beelen had improvements related to fatigue, as I have. Very very sorry for you Erika that it did not seem to do the trick in your case 
I wish you a good Symposium in Slovakia and also that your check with Simka will give you a bit of positive energy ❥✫✫✫☼☼☼...•°*”˜˜”*°•.☼•*¨*•☼ hope in the meant-time the first energy shot arrived well !
I wish you a good Symposium in Slovakia and also that your check with Simka will give you a bit of positive energy ❥✫✫✫☼☼☼...•°*”˜˜”*°•.☼•*¨*•☼ hope in the meant-time the first energy shot arrived well !