This Is MS Multiple Sclerosis Community: Knowledge & Support

whyRwehere, those doctors are idiots treating you like that, no doubts. Please dont give up. You are on the right track and you know it. We are all here for you.

Jean, well done friend. France is a great country and could take ccsvi reasearch much further if you guys help.
I d surely love to know what the hell happened with that web page. Drop us a couple of lines if you find out.

Hi everybody,

WhyRwehere, you're completely right.
In August 2009 on Arsep's website (ARSEP as you know is the most known research association in France dedicated to MS Research),
someone created a topic on CCSVi Into the forum section.
Since this date, 130 pages were created, including many links, general information, translations from many sources including thisisms, videos..

I was with some other people as you know involved in this subject.

One week ago, for unknown reasons from today, all of the topic was cancelled, without any justification given.

I sent a registred letter last monday to the president of Arsep Association, to ask clarification about what it looks like inacceptable censored action.

Even if ARSEP gave some months ago information about CCSVI, They indicated also clearly that no assesment will be planned at this moment for CCSVI in France, and their attitude has never been very "positive" about it.

Here is the sad story

Whatever could be the reply, we plan to establish in the next weeks our own "free" forum regarding this subject of research among other ones.

Have a good day, and Cheer, Congratulations again for your wonderful work

Fred

That's a good idea Fred...how about c'estsep.com....

Unbelievable!!!! Sounds like everyone needs to hit up the ARSEP offices, go after them, boycott fundraisers and create your own for CCSVI. Let them know if they don't put the patient first, they will be last...

Thank you everybody for your happiness and friendship

I actually live in Lyon, and consult my neuros there. I won't wait 15 more years to feel better. I will be carefull with Dr Greiner, but if the risks are low, i will soon be treated.

I can not manage dealing with my job and health issues anymore and and have not enough strengh to wait any longer.

I received an e- mail from Dr Greiner...here is a part of it :

Cher Monsieur,
Compte tenu des demandes depuis la réalisation des premiers cas, je suis en train de m'organiser pour pouvoir réaliser des traitements sur une plus grande échelle à l'Hôpital de la Pitié-Salpétrière.
Je vous tiendrais informé rapidement.

I translate shortly : Dr Greiner has to face more and more demands and is working to be able to perform more intervention in Pitié-Salpêtrière hospital.

That is super news!! I'm sure Charcot and Babinsky would approve!!

"Cher Monsieur,
Compte tenu des demandes depuis la réalisation des premiers cas, je suis en train de m'organiser pour pouvoir réaliser des traitements sur une plus grande échelle à l'Hôpital de la Pitié-Salpétrière.
Je vous tiendrais informé rapidement."

Here is my translation:

Dear Sir,

Considering the fact that we have received several requests since the first cases were "treated", I am presently organising the possibility of having treatments on a larger scale at the "Hôpital de la Pitié-Salpétrière. (This is a French hospital located in Paris http://www.aphp.fr/index.php?NIHOPITAL= ... ue=portail).

I will keep you informed quickly (as soon as more information becomes available....this is not a direct translation, but more of an interpretation of the writer`s intentions).

Hope this helps.

Thank you, Jean, for these informatione!
I have got an appointment with Dr Franschetti on monday 15th of march, but I did not precise that it was for a
CCSVI diagnosis. Would it be better to tell him that before?
How can we get in contact with Dr Greiner? have you got an E-mail adress?

I hope that you can have your treatment soon Indiana

Hello everybodi,

My neuro is also in Lyon (hopital Werteimer) and not very uggly (maybe de same as Jean)
But it looks that she is not very open minded (i transmit her documents about CCSVI and had no repply) (maybe not the same as Jean)

His name is Dukovic. If i have news from her i will let you know!

Good evening

Hi everybody,

I have an appointement with Dr Greiner, in Paris, on 20th of april.
She asked me to bring two MRI (one cerebral and venous, this other on the veins of my neck). I have to also bring my doppler, done by Francheschi and some papers from my neuro.

The appointement will take place in the American hospital of Paris.
here's a link to their website :

https://www.american-hospital.org/

Now my point of view and my expectations. It appears that at lot is still unknown about CCSVI and its relationship with MS. However, i just focus on the fact that, in my case, the doppler performed by Franceschi showed i have no blood flow in my jugular veins. As we all know, we have great hopes that a treatement of this kind of abnormality will provide benefits for us.
So the questions are, will Dr Greiner confirm i have a stenose or another trouble ? Can she do something to help me ?

More news to come soon...

Jean

PS : concernig the financial outcomes of the consultation, and of an intervention, please ask to the hospital.
For us (french people), we are covered for MS related costs. I don't have more details.
The consultation should be free for me, and then, i'll see what to do.

Hi, everybody!

I had my doppler done by Dr Franceschi today. He seems to be a very nice doctor.

We are lucky to have somebody like that in France!

He found that I had a stenosis of the right jugular vein with correct blood flow.
There is now blood flow at the left jugular vein. The blood flow is important in the posterior jugular veins.
Since he was a bit late for his appointments, he had not got much time to explain to me what was normal:no blood flow/ or an important blood flow.

Perhaps somebody can help me for that?

Dr Franceschi told me that I had stenosis, but that it was not possible for me to have the treatment yet, because my MS is not in a quite advanced stade and they are only treating emergencies now.
He hopes that there can be more patients operated at the end of the year.

I was really disappointed when I heard that, because my MS is actually not very old, but rather active.

However, I will try to get an appointment with the Dr Greiner.

Thank you for the link of the american hospital, Jean!
Did you use it to you send your mail to Dr Greiner?

How will you manage to get a venious MRI?

Is there any possiblity to have that done in France?

Or did Dr Greiner simply ask for the current MRIs that we get for our neuros?

Did you receive your doppler pictures from Dr. Franceschi? He did not give me mine.

Thanks to all the active people on this forum.
Without you, I would never have this examination done.

A bientôt Indiana

Hello everybody,

I went and see Dr Franceschi yesterday. He is someone very human and did the doppler without even asking anything; he said What can I do for you, and when I answered MS, he did the doppler straight away.

Unfortuneately for me, he found virtually nothing:

Right jugular: Normal
Left jugular: Normal
Left and right jugulars and right vertebral vein: Normal
No flow detected on left vertebral vein
Right vertebral vein: Normal calibre with flow modulated by posture
Posterior jugular veins: Normal flow

So the only slight problem he could find was with the left vertebral vein... probably a valve problem... but he said that this was a problem we could find in normal people...

So for now, it seems that I'm back to square one !

Indiana, thank you for your three private messages, I'll write back to your personal address once I've got rid of my terrible migrain.

Jean,
Although we have coverage for MS, there will be a fee at the American Hospital (I think something like 80€), which you will have to try and claim back from your mutuelle, and they only take cash or cheque. At the other clinique there was a fee for the radiology, I believe, and at Pitie-S, there was no fee(providing you have 100% and your carte vital).
I feel badly for you guys who have MS, but don't show the blockages...I think the blockages are going to show up somewhere else...as someone said in another thread, the system is one big loop. Less pressure in one place makes less in another. Just hope what you do have will be fixable!

Jean,

Good luck with your consultation tomorrow. You will be in good hands under Dr. Greiner, she's a wonderful, caring woman.

Keep us posted!