Hi Sue
Thank you for all the excellent advice. I completely understand why you can't post the doctors' name without his approval.
.Please excuse my anxiety.
He is 38years old.and as of October 2009 when he was diagnosed with
MS his life has completely stopped. He is definetely in the process of suffering from depression. He is in a state of panic
Best wishes to everybody.
miranda
CCSVI in Greece
I can understand your anxiety. MS is a family issue. It never affects just the patient him/herself.
Depression can be only bad for him. Diagnosed at the age of 21, I have suffered from it for many years and I know that it can be worse than MS itself.
Consider talking to a psychiatrist for suggesting proper treatment. And proper means consultation with a psychotherapist and if needed (emphasis here IF AND ONLY IF NEEDED!!!) prescribe an antidepressant to aid him familiarize himself with his treatment. And, for $DEITY 's sake, do not take any drug that will increase his weight! Demand it to your doctor. Never gain weight, never, never!
I apologize for being so emotional, but I don't want anybody else suffer what I suffered by antidepressants. I wish I knew as much as I do now when I first started treatment.
Summarizing: Drugs are depression's fire extinguishers. They are great as a first aid but do nearly nothing for the whole problem. Psychotherapy can be really effective and get rid of depression at its roots, without even realizing how that happened.
Depression does not have to be tolerated. Especially now that the MS end titles have started to appear and the patients, one by one, have started leaving the cinema.
Good luck! My best wishes! And don't take drugs that increase the weight!
sou
Depression can be only bad for him. Diagnosed at the age of 21, I have suffered from it for many years and I know that it can be worse than MS itself.
Consider talking to a psychiatrist for suggesting proper treatment. And proper means consultation with a psychotherapist and if needed (emphasis here IF AND ONLY IF NEEDED!!!) prescribe an antidepressant to aid him familiarize himself with his treatment. And, for $DEITY 's sake, do not take any drug that will increase his weight! Demand it to your doctor. Never gain weight, never, never!
I apologize for being so emotional, but I don't want anybody else suffer what I suffered by antidepressants. I wish I knew as much as I do now when I first started treatment.
Summarizing: Drugs are depression's fire extinguishers. They are great as a first aid but do nearly nothing for the whole problem. Psychotherapy can be really effective and get rid of depression at its roots, without even realizing how that happened.
Depression does not have to be tolerated. Especially now that the MS end titles have started to appear and the patients, one by one, have started leaving the cinema.
Good luck! My best wishes! And don't take drugs that increase the weight!
sou
ccsvi in greece
Hi Sue,
Thanks again for all help. Even though his sister is a phychotherapist
and we have committed to a 24/7 help line open for him it has been almost impossible to help him. As you mention the only treatment that psychiatrists prescribe are antidepressants. Iwould like to share this with
you , I have JUST received an email from Prof. Grozdinski Chairman
of the Bulgarian National Phlebology Society they have included my son
in the waiting list for September 2010 CCSVI TESTING. For the time being Tokuda Hospital Sofia Bulgaria is the only CCSVI Center that
has replied with a date. Any comments or info regarding treatment in
Bulgaria?We reside in Athens.
PS By the way I told him that you suggested to quit smoking , maybe
he will pay attention to your advice since he ignored my warning
Miranda
Thanks again for all help. Even though his sister is a phychotherapist
and we have committed to a 24/7 help line open for him it has been almost impossible to help him. As you mention the only treatment that psychiatrists prescribe are antidepressants. Iwould like to share this with
you , I have JUST received an email from Prof. Grozdinski Chairman
of the Bulgarian National Phlebology Society they have included my son
in the waiting list for September 2010 CCSVI TESTING. For the time being Tokuda Hospital Sofia Bulgaria is the only CCSVI Center that
has replied with a date. Any comments or info regarding treatment in
Bulgaria?We reside in Athens.
PS By the way I told him that you suggested to quit smoking , maybe
he will pay attention to your advice since he ignored my warning
Miranda
Hi.
I think that close relatives and friend are not appropriate for performing psychotherapy. And he might need some antidepressant to calm down his negative thoughts (the fire extinguisher...) and allow his therapist to access them and treat them.
I am a very negative person, so I have no right to blame anyone. But I have to admit that this stance is unhelpful, at best, disastrous, at worst.
Smoke has been associated with negative MS outcomes in terms of progression and quality of life. We had had no idea why this happened, but venous theory made it pretty obvious: the neural cells are oxygen deprived and smoking makes hypoxia even worse. Not to mention the damage on the venous walls.
Since he smokes, he should take large amounts of antioxidant vitamins, C and E. In addition, ask him if he would like to take high amounts of fish oil. It would make his blood flow better and they have some effect on depression, especially when EPA is not accompanied with DHA.
Don't take it as an ad, but I have found Dr Tolonen's E-EPA to be very potent and does not contain any DHA. EPA can be easily converted to DHA within the body when needed.
HTH,
sou
I think that close relatives and friend are not appropriate for performing psychotherapy. And he might need some antidepressant to calm down his negative thoughts (the fire extinguisher...) and allow his therapist to access them and treat them.
I am a very negative person, so I have no right to blame anyone. But I have to admit that this stance is unhelpful, at best, disastrous, at worst.
Smoke has been associated with negative MS outcomes in terms of progression and quality of life. We had had no idea why this happened, but venous theory made it pretty obvious: the neural cells are oxygen deprived and smoking makes hypoxia even worse. Not to mention the damage on the venous walls.
Since he smokes, he should take large amounts of antioxidant vitamins, C and E. In addition, ask him if he would like to take high amounts of fish oil. It would make his blood flow better and they have some effect on depression, especially when EPA is not accompanied with DHA.
Don't take it as an ad, but I have found Dr Tolonen's E-EPA to be very potent and does not contain any DHA. EPA can be easily converted to DHA within the body when needed.
HTH,
sou
ccsvi in greece
Hi all
Sue once more thank you for all the detailed info. I would like to inform
everyone that I received an email from a new clinic AMEDS in Poland
apparently they will be starting the ccsvi testing in April anyone interested
should register.
miranda
Sue once more thank you for all the detailed info. I would like to inform
everyone that I received an email from a new clinic AMEDS in Poland
apparently they will be starting the ccsvi testing in April anyone interested
should register.
miranda
ccsvi in greece
Hi all,
Just a quick note regarding ccsvi awareness in Greece . I was informed that the Canadians are writing letters to their ministers in order to
include ccsvi in their health system and in the United States they
will soon have ccsvi alliance. Iam worried regarding clinics popping up
around the world . How cretitable are they?We certainly don't want to
be guinea-pigs . Any thoughts
.
Miranda
Just a quick note regarding ccsvi awareness in Greece . I was informed that the Canadians are writing letters to their ministers in order to
include ccsvi in their health system and in the United States they
will soon have ccsvi alliance. Iam worried regarding clinics popping up
around the world . How cretitable are they?We certainly don't want to
be guinea-pigs . Any thoughts
.
Miranda
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costumenastional
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Miranda, please, take it locally if possible. I am Greek too and i strongly suggest that you get a firm diagnosis of ccsvi via a doppler or something before you jumb into the boat and travel abroad. If SOMETHING is indicating a vascular problem and no operation can take place then it would be only logical to go wherever to fix it.
I for one have a date for Bulgaria soon enough but i will make everything possible to get scanned here first. Money is a problem of course but trust is way more important. I d love not to have to revisit the eastern block every now and then for follow ups.
Only yesterday my sister had a talk with a very well known surgeon and guess what: he knew about Zamboni, he even asked her if i already have had a doppler, not to mention that he also knew about campath, a monoclonal antibody still in experimental usage.
My point is that SOME doctors here are up to date. Note that he is not even a vascular surgeon, nothing to do with MS whatsoever.
They know. Believe me they do.
Medical ethics stand in their way for taking it further but the doppler should be available soon one way or another. At least i hope so...
I trust your son have not already progressed so much. A couple of months waiting may do the trick.
Finaly, i believe he should not start medication like Zanax just yet. Also seing a therapist may help or not. I just know that they cost a shit load of money just to have someone to talk to. Maybe he could talk with other patients instead of having his family doing it for him. Let him catch his breath on his own. Except if he is suicidal already.
Just my personal view about therapists of course. But MS is not a problem that any therapist will make vanish. It is a chronic condition each and every one of us have to come in terms with eventually. It is a matter of character i suppose but all i remember fro my "therapist" is of her taking glimpses of her watch when the time for our "session" to finish was coming.
Oh yeah, she had a nice ass too.
I for one have a date for Bulgaria soon enough but i will make everything possible to get scanned here first. Money is a problem of course but trust is way more important. I d love not to have to revisit the eastern block every now and then for follow ups.
Only yesterday my sister had a talk with a very well known surgeon and guess what: he knew about Zamboni, he even asked her if i already have had a doppler, not to mention that he also knew about campath, a monoclonal antibody still in experimental usage.
My point is that SOME doctors here are up to date. Note that he is not even a vascular surgeon, nothing to do with MS whatsoever.
They know. Believe me they do.
Medical ethics stand in their way for taking it further but the doppler should be available soon one way or another. At least i hope so...
I trust your son have not already progressed so much. A couple of months waiting may do the trick.
Finaly, i believe he should not start medication like Zanax just yet. Also seing a therapist may help or not. I just know that they cost a shit load of money just to have someone to talk to. Maybe he could talk with other patients instead of having his family doing it for him. Let him catch his breath on his own. Except if he is suicidal already.
Just my personal view about therapists of course. But MS is not a problem that any therapist will make vanish. It is a chronic condition each and every one of us have to come in terms with eventually. It is a matter of character i suppose but all i remember fro my "therapist" is of her taking glimpses of her watch when the time for our "session" to finish was coming.
Oh yeah, she had a nice ass too.
Last edited by costumenastional on Thu Mar 11, 2010 3:42 am, edited 1 time in total.
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costumenastional
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Just received an e mail from Euromedic Poland:
Here is hte interesting part.
"Plese keep in mind that MRV and the Doppler are just initial examinations,
it's the phlebography which is the first stage of the procedure that gives
the doctors full view of the patients' condition. Therefore we do not accept
visits for MRV and Doppler only, as this doesn't give full answer to doctors
questions, they cannot make a decision regarding the method of treatment
(balooning or stenting) until phlebography is performed."
Means, if you wanna come you are going all the way. We want money, either way. Not loosing time over diagnostics. Intervention is where the money come from.
Also notice their typing. It is obviously a quicki.
Last part goes like this:
"Please confirm by Friday 12 March if you're willing to take whole the
treatment on April 20 and 21. Shall you not show interest in these dates, we
will postpone your threatment onto indefinite time later this year."
Which translates like: decide in one day. Tomorrow will be very late for you. Now or never!!!! It s a bargain!!!!!
HAHA it s a joke Miranda... it is so obvious. They want to make money from a very simple procedure. And they know time is not on their side.
Please, find the way to get your son examined by one of our fine doctors. This is the correct way.
Here is hte interesting part.
"Plese keep in mind that MRV and the Doppler are just initial examinations,
it's the phlebography which is the first stage of the procedure that gives
the doctors full view of the patients' condition. Therefore we do not accept
visits for MRV and Doppler only, as this doesn't give full answer to doctors
questions, they cannot make a decision regarding the method of treatment
(balooning or stenting) until phlebography is performed."
Means, if you wanna come you are going all the way. We want money, either way. Not loosing time over diagnostics. Intervention is where the money come from.
Also notice their typing. It is obviously a quicki.
Last part goes like this:
"Please confirm by Friday 12 March if you're willing to take whole the
treatment on April 20 and 21. Shall you not show interest in these dates, we
will postpone your threatment onto indefinite time later this year."
Which translates like: decide in one day. Tomorrow will be very late for you. Now or never!!!! It s a bargain!!!!!
HAHA it s a joke Miranda... it is so obvious. They want to make money from a very simple procedure. And they know time is not on their side.
Please, find the way to get your son examined by one of our fine doctors. This is the correct way.
Hi Costume National
I think that your password is very chic. I understand that it is wise to
seek the advice of a Greek vascular surgeon, but I doubt that they have
the training to detect ccsvi,or are up to date with the necessary epuipment. By the way , do you intend to accept the Euromedic
conditions? I am so confused with all the necessary steps, MRV,SWI,
prorocols etc . This is so new to me and Icertainly don't want to take the
wrong path. Everyday I am mentally in Poland Serbia Bulgaria USA etc
seeking advice.
Be well
Miranda
I think that your password is very chic. I understand that it is wise to
seek the advice of a Greek vascular surgeon, but I doubt that they have
the training to detect ccsvi,or are up to date with the necessary epuipment. By the way , do you intend to accept the Euromedic
conditions? I am so confused with all the necessary steps, MRV,SWI,
prorocols etc . This is so new to me and Icertainly don't want to take the
wrong path. Everyday I am mentally in Poland Serbia Bulgaria USA etc
seeking advice.
Be well
Miranda
Hi.
In my experience with greek doctors trying to diagnose CCSVI, I have found them 100% adequately technically equipped. They are just not ready to accept the new theory.
My CCSVI affected the eyes of a radiologist and didn't see the shadow in my azygos. Further research is needed to conclude how my blocked vein affected the eyes and judgement of my MRV radiologist.
Seriously. Find a radiologist willing to listen, here in Greece. Sometimes, the anomalies are so obvious that they can be seen within seconds.
Don't give up hope. My professors at the Patra's University Hospital are already informed and they are trying to research the CCSVI phenomenon as deeply as possible. They have already diagnosed a friend of mine, with a close relationship with one of the professors, who offered herself as a guinea pig. Her stenoses were SO obvious that could be seen with the ultrasound alone.
Things keep moving in Greece. If they accept it as a condition, it will be soon introduced at our national health system.
sou
In my experience with greek doctors trying to diagnose CCSVI, I have found them 100% adequately technically equipped. They are just not ready to accept the new theory.
My CCSVI affected the eyes of a radiologist and didn't see the shadow in my azygos. Further research is needed to conclude how my blocked vein affected the eyes and judgement of my MRV radiologist.
Seriously. Find a radiologist willing to listen, here in Greece. Sometimes, the anomalies are so obvious that they can be seen within seconds.
Don't give up hope. My professors at the Patra's University Hospital are already informed and they are trying to research the CCSVI phenomenon as deeply as possible. They have already diagnosed a friend of mine, with a close relationship with one of the professors, who offered herself as a guinea pig. Her stenoses were SO obvious that could be seen with the ultrasound alone.
Things keep moving in Greece. If they accept it as a condition, it will be soon introduced at our national health system.
sou
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costumenastional
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- Location: Greece
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Hi! And thanks... I used to be chic also before ms...
Well, you may be right about them not being able to detect CCSVI Miranda.
To be honest, i am not even sure it's MS that i suffer from since my case is not exactly typical. This is why i hesitate to travel abroad so soon. A negative CCSVI diagnosis would cripple me even more. I just want to have some kind of indication before i go over to Poland, Bulgaria, Serbia, India, USA, France, Germany and so on...
I think (and this is strictly me) that CCSVI diagnostis can take place here. If not today, maybe in a couple of months. I must inform you that only 2 months ago the only place one could go was Poland. Look what's happening now! I suspect that with these rates it wont be long for us Greeks too. We have good doctors. I think...
Miranda, i get your frustration, i really do. And if you want to take your son to Poland or wherever, then by all means do ti. I dont think it s wrong. On the contrary.
All this is frightening for you and your family, i know that much.
But i think i ll stick around, wait until they wake up. And they will wake up.
CCSVI is not brain surgery and i feel like i have the time needed. Thank God it doesnt go aggressive on me.
Just one more think: right after Christmas, the only thing i had in my mind was to manage to get in a list.
Now my email is full of proposals. I dont know...
Anyway, good luck with whatever you decide to do. In any case, there is hope. As long as we keep our feet on the ground we ll manage.
I am always around so i ll let you know about my decision soon.
Well, you may be right about them not being able to detect CCSVI Miranda.
To be honest, i am not even sure it's MS that i suffer from since my case is not exactly typical. This is why i hesitate to travel abroad so soon. A negative CCSVI diagnosis would cripple me even more. I just want to have some kind of indication before i go over to Poland, Bulgaria, Serbia, India, USA, France, Germany and so on...
I think (and this is strictly me) that CCSVI diagnostis can take place here. If not today, maybe in a couple of months. I must inform you that only 2 months ago the only place one could go was Poland. Look what's happening now! I suspect that with these rates it wont be long for us Greeks too. We have good doctors. I think...
Miranda, i get your frustration, i really do. And if you want to take your son to Poland or wherever, then by all means do ti. I dont think it s wrong. On the contrary.
All this is frightening for you and your family, i know that much.
But i think i ll stick around, wait until they wake up. And they will wake up.
CCSVI is not brain surgery and i feel like i have the time needed. Thank God it doesnt go aggressive on me.
Just one more think: right after Christmas, the only thing i had in my mind was to manage to get in a list.
Now my email is full of proposals. I dont know...
Anyway, good luck with whatever you decide to do. In any case, there is hope. As long as we keep our feet on the ground we ll manage.
I am always around so i ll let you know about my decision soon.
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Vhoenecke
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Re: ccsvi in greece
[quote="miranda"]Hi Sue,
I have JUST received an email from Prof. Grozdinski Chairman
of the Bulgarian National Phlebology Society they have included my son
in the waiting list for September 2010 CCSVI TESTING. For the time being Tokuda Hospital Sofia Bulgaria is the only CCSVI Center that
has replied with a date. Any comments or info regarding treatment in
Bulgaria?We reside in Athens.
I have JUST received an email from Prof. Grozdinski Chairman
of the Bulgarian National Phlebology Society they have included my son
in the waiting list for September 2010 CCSVI TESTING. For the time being Tokuda Hospital Sofia Bulgaria is the only CCSVI Center that
has replied with a date. Any comments or info regarding treatment in
Bulgaria?We reside in Athens.
-
Vhoenecke
- Family Elder
- Posts: 332
- Joined: Sat Dec 12, 2009 3:00 pm
- Location: Rosetown, Canada
- Contact:
Oops I hit the wrong button in my previous post. I was going to respond saying that I have a date in June for Bulgaria. I would like to say that you are so fortunate to live so close to Bulgaria. I will be coming from the middle of Canada. I will keep you posted as to my dated and the procedure itself when I return.
Smoking! A lot of MSers are former smokers(me included) lends to the vascular theory.
Take care and sorry about the above post.
Val
Smoking! A lot of MSers are former smokers(me included) lends to the vascular theory.
Take care and sorry about the above post.
Val
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costumenastional
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