Erika`s procedure in Poland

[ozarkcanoer]

Oh Zeureka, what a terrible experience for you and what a terrible doctor to say these things to you. I get so angry with specialists who cannot empathize with their patien'ts horrible symptoms and tell them "you have to live with it" !!!! You are right. It would be wonderful if I could make my neurologist feel what I feel for just 5 minutes... that would change HIS life and attitude. I'm glad that you have another doctor who understands. I have always thought that doctors who deal directly with patients should pass an "empathy test" before being certified. Even if your doctor doesn't believe in CCSVI, why does he trample on any hope you have ?

ozarkcanoer

[Zeureka]

Oh Zeureka, what a terrible experience for you and what a terrible doctor to say these things to you. I get so angry with specialists who cannot empathize with their patien'ts horrible symptoms and tell them "you have to live with it" !!!! You are right. It would be wonderful if I could make my neurologist feel what I feel for just 5 minutes... that would change HIS life and attitude. I'm glad that you have another doctor who understands. I have always thought that doctors who deal directly with patients should pass an "empathy test" before being certified. Even if your doctor doesn't believe in CCSVI, why does he trample on any hope you have ?

ozarkcanoer

Yes, ozark, you're right, like also teachers with kids. For me the best doctors are those that understand that making you feel better can be 50% support, listening and understanding. However hopeless the situation may be. I do not blame any doctor feeling helpless in the political mess, but I do on attitude and being so sure about certain things without having studied them in detail.
My Italian GP is not helping me immensely actively, however when I propose a strategy/solution (for which he understands I invested time) he reflects, listens, shows interest to learn and opens me the way I want to go by the measures he can offer. This is a gift and attitude not many have. I appreciate it a lot. It is an optimistic approach and often brings fruit and success.

Steffi

[Reytan]

Hi Erika,
Thank you for all your great updates and excellent support you give us on this forum. Your personal experiences and insides from Katowice and Zabrze mean so much for all of us who will follow your steps. I wish you all the best with your improvements.

Hi Stefanie,
It is a shame that somebody who supposes to help people like us actually says such awful things and is so unsupportive. Unfortunately, he is one of many individuals who consider themselves doctors, but in reality they behave as ordinary butchers. Many of us have similar experiences. It is so hard to come across a real and dedicated doctor for whom we are not just another case in his filing cabinet.

[pgm1]

Hi Zeureka

I am so very sad you had that experience with your Doctor,they can be so arrogant at times it's shameful.

Pam

[pgm1]

Hi Erika

I Hope you are well now and i wanted to run this by you and to read what you think and of course everyone else,i have posted it before but not a new thread.

http://healingpowernow.com/

Pam

[ErikaSlovakia]

Hi Erika

I Hope you are well now and i wanted to run this by you and to read what you think and of course everyone else,i have posted it before but not a new thread.

http://healingpowernow.com/

Pam

Hi Pam,
everybody, well at least members who are longer here or people who are on LDN know SammyJo very well. She is one of us. I do not know exactly what is your question regarding SammyJo.
I take LDN and I have a stent so I think it is pretty clear what I think about it
Erika

[pgm1]

Hi Erika

I'm sorry for the confusion as this is the first time i have heard of this and i assume LDN stands for Low Dose Naltrexone?
What thread do people talk about this?

Thanks Pam

[ErikaSlovakia]

Hi Erika

I'm sorry for the confusion as this is the first time i have heard of this and i assume LDN stands for Low Dose Naltrexone?
What thread do people talk about this?

Thanks Pam

Oh, I get it now
This is also from SammyJo and LDN: http://www.ldners.org/index.htm#LDNBook
We also talk about LDN on TIMS: http://www.thisisms.com/forum-10.html
There is of course more on the internet.
Erika

[pgm1]

Hi Erika

Thanks for the information and TIMS link for LDN

Pam

[MAREK]

hello ... just briefly as I am now scheduled for the procedure in Katowice on 1 March. ... as early as now /considering my doppler on 7 Jan./ ... unlike the 2-year waiting dr Ludyga told me ... but first I need a MRV in Zabrze this coming Thursday ... trying to think positively towards the CCSVI surgery on me ... take care!

[ErikaSlovakia]

Good luck, Marek!
Erika

[Johnson]

Yes, good luck, Marek!

[ErikaSlovakia]

IMPORTANT
I am officialy anemic. My ferritin in blood is only 10,4. Normal levels are 15 -150 or 18-150.
You know I complain about these symptoms: Fatigue, weakness, too fast heart beating, foggy brain.
Well, all of these symptoms are also in people with low ferritin because they are anemic.
My GP says it is OK but I already know it is not.
Lucky me I can buy the pills - Aktiferrin without prescription.
It will take 3-6 months until I get better. My ferritin should be at least 50. The best would be 70-90.
I have had these symptoms for 6 years. You can imagine how I feel with combination of MS.
They have never checked my ferritin only now because it was me who asked the doctor to do the test.

I just should be carefull with exercising. So the reason why I was so weak and tired after my PT was anemy not MS so much.

Right now I just feel weak a lot I do not feel any fatigue but I only sit and do nothing.

Erika

[Zeureka]

IMPORTANT
I am officialy anemic. My ferritin in blood is only 10,4. Normal levels are 15 -150 or 18-150.

Erika, that's indeed not nice to hear, so maybe to eliminate too much iron from the diet can be harmful. By the way: Some CCSVI experts told me that in their view my high blood iron level (which had upon onset of a relapse 3 years ago) had nothing to do with the CCSVI iron problem...
I would therefore think it is hard to influence the CCSVI problem via a low-iron diet... What needs to be done is to eliminate the vein blockage and get the iron/other heavy metal deposits away of the brain area where they accumulated due to blockage. This is still a challenge...

I started to stop eating spinach/other high iron foods and now realise it could be an unhealthy approach...thanks Erika for reminding me.

Steffi

[ErikaSlovakia]

IMPORTANT
I am officialy anemic. My ferritin in blood is only 10,4. Normal levels are 15 -150 or 18-150.

Erika, that's indeed not nice to hear, so maybe to eliminate too much iron from the diet can be harmful. By the way: Some CCSVI experts told me that in their view my high blood iron level (which had upon onset of a relapse 3 years ago) had nothing to do with the CCSVI iron problem...
I would therefore think it is hard to influence the CCSVI problem via a low-iron diet... What needs to be done is to eliminate the vein blockage and get the iron/other heavy metal deposits away of the brain area where they accumulated due to blockage. This is still a challenge...

I started to stop eating spinach/other high iron foods and now realise it could be an unhealthy approach...thanks Erika for reminding me.

Steffi

I never went on low iron diet. I know it from the beginning iron in blood or food does not affect our iron deposits.
The second thing is my iron in blood is too high: 29,8 - maximum should be 26.
I am still confused. I have talked to my friend - hematologist today. She says I for sure need more test. She will do it on March 12th. In the meantime I can take pills to get my iron higher but only 2 per day.
I have also received an e-mail from Dr. Schelling. He says I do not have to worry about my iron deposits right now.
I follow Swank diet but not perfectly.
Erika