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Posted: Mon Sep 08, 2008 5:43 am Post subject: Hi from Italy
Hello everyboby, I'm italian so I apologize for all the mistakes I'm gonna make (correct them if you want).
I'm happy I found this web site, I know a similar italian one, but I don't know why I think here i could find something more.
My boyfriend has MS, his story started in 1994. For the first 8 years his doctor and his family didn't even tell his what was the real problem (they just talked about a "demielinizzante" desease (I don't know the english word, it means tha mielina gets damaged). After that, he took a very long time to realise he had a serious problem (he doesn't have any disability). In the end he finally accepted to start rebif. We started last june, so we just began...
In Italy rebif is the most valuated medcin for MS and if a person can manage doctors choose this one. Otherwise there is Copaxone, that is said to have more or less the same efficacy but takes some month more to be effective.
The third possibility is copolimero, which is used with those people tha cannot stand rebif or copaxone.
We have a research project on Fingolimod, but now thing are difficult because two people died during last months so everybody is a bit scared about this.
do you have something more in your countries?
thank you everybody
bye
chicca
Hi Chicca and welcome. I was diagnosed in March/April 2008. I completed my first round of Campath infusions in July. I received this treatment through a clinical trial comparing campath and rebif. I am not sure if this is being offered in Italy. You can search this site to find out more information regarding this drug. There is a wealth of other information on this site also and I have found it to be encouraging to be able to read and realize that I am not alone with MS.
welcome in this site. I am also from Europe - Slovenia, diagnosed february 2008, am also on rebif since march this year
........
wish you and your boyfriend just sunshine .......
thank you freiguy and anita (we are almost neighbours!)!
for freiguy: I never haerd about campath, I looked up for it in the aism site (that is the italian association of MS patients) but I just found that there was a trial in 2005 that was stopped because 2 people had great problems with it. 3 years are passed so I donpt think that could be the same formulation you are taking. I'm gonna ask the neurologist next time, even because after you told me about it i read on this side that it is supposed to be more efficient than rebif. I'm gonna read the other post you left (I saw that you described collateral effect and I'm very interested in them): thank you very much!!!!
chicca
No problem. You can find quite a bit of good information on this site about campath. I am just two months into it but there are others here who have had the infusions several years ago.
thank tou Lyon, really interesting.
I asked our neurologist last week about the situation of campath here in Italy but he told us that trials have been stopped 2 years ago because of some problems never cleared up well... so, we are waiting for good news from the states, and in the meanwhile continue with rebif!
chicca
Joined: Sep 11, 2007 Posts: 776 Location: southern California
Posted: Sun Sep 28, 2008 11:50 am Post subject:
Ciao, Chicca!
Just responded to your wii question on the other thread-
Wanted to mention that there is alot your boyfriend can do for his health with diet and supplements. Look into vitamins D and B-12, and read up on omega 3 oils and magnesium/zinc/calcium. An Italian mediterranean diet is good, with healthy olive oil, fresh fruits and vegetables and fish. Also red wine! And enjoy the sunshine.
My husband has done well on copaxone, but it does take around 6 months to become effective on the t-cells.
Wishing you all the best,
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Ciao, Chicca!
Just responded to your wii question on the other thread-
Wanted to mention that there is alot your boyfriend can do for his health with diet and supplements. Look into vitamins D and B-12, and read up on omega 3 oils and magnesium/zinc/calcium. An Italian mediterranean diet is good, with healthy olive oil, fresh fruits and vegetables and fish. Also red wine! And enjoy the sunshine.
My husband has done well on copaxone, but it does take around 6 months to become effective on the t-cells.
Wishing you all the best,
AC
Really thank you!
This forum makes you "feel less alone" (i don't know if this sentence makes sense, actually it is the translation for an italian expression...)
I saw that there a lot of suggestions about diet and supplement (about red wine: unfortunately it seems to increase rebif side effects, and that could be a big problem sice my boyfrend is an oenologist....).
I began to read a lot of things, I have to understand something about how this desease works and what substances are good or not.
I must confess that even if we know about it since a long time, i never addressed it seriously. I mean: even if it is very stupid, i think my heart hoped it could be fine. Besides, I had big problems with my mum. She had a cancer, a really rare one, so all our strenghts, time and effords were put into it. Because while ms is a very slow thing to get worse (almost in our case), cancer grows extremely quickly and you can see people change day to day. So, even if I realised it was a nonsense, i put myself on my mother disease because i thought we can manage it and then face ms. i was terribly wrong. so, now i'm here to begin to understand what we can do to fight against ms. and i'd like to thank you all for your support!
chicca
Joined: Sep 11, 2007 Posts: 776 Location: southern California
Posted: Mon Oct 06, 2008 10:13 am Post subject:
chicca wrote:
This forum makes you "feel less alone" (i don't know if this sentence makes sense, actually it is the translation for an italian expression...)
"Feel less alone" is the perfect way to say it, Chicca. I only know "Sola, abbandonata" from La Traviata, but my Italian is too operatic
Your English e perfetto.
I'm sorry about your mother's cancer and now your boyfriend's MS. Keep reading, learning and take un giorno al tempo.
ciao,
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
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