Tysabri & CCSVI - My thoughts and my experiences March 2010

In this video I mention the latest cases of Tysabri (we are up to 42 cases and 9 deaths caused by PML) and I talk about CCSVI and the Liberation procedure that is being done at Georgetown University Hospital in Washington DC. Things are not moving fast enough, but they are moving and I think that its important to keep hopeful and to keep informed.
While Tysabri is helping me move better, I can say that my cognition is not improving at all and I continue to have cognitive issues. I do believe that the combination of Tysabri, the high dose of Vitamin D and the cranial sacral therapy that I do every two weeks is the right combination of therapies for me at the moment.
I do dream of the day when I won't have to take Tysabri any more and I will be able to get the Liberation treatment!
If you would like information about the Liberation procedure, please visit the following sites:
pages/Flowers...
/ 110796282297
www.fondazionehilarescere.org/...

Пікірлер: 35

  • @cristinadreamer
    @cristinadreamer14 жыл бұрын

    You're always here,dear Angela, sharing your experience,saying beautiful,encouraging,important words,giving always hope to everybody. I hope with all my heart that you'll win this fight. May God give you the necessary power and energy and may all His love surround you.

  • @VernBeachy
    @VernBeachy14 жыл бұрын

    Angela; I agree completely: maybe one day we won't have to worry about contracting PML from a drug we are taking. Fir me, Tysabri has improved my cognition a great deal. I hope yours improves in time. Thanks Angela!

  • @3caroladams
    @3caroladams14 жыл бұрын

    Thank you for your courage you are a shinning star for us all, good luck with the next stage of treatment for CCSVI best wishes carol

  • @ThePennygirl
    @ThePennygirl14 жыл бұрын

    Thank you for all your updates ! it means so much to me as am facing the Tysabi route in a few months as I have failed the other meds. I have not been on any meds since since last June, as Inus. ran out and choose not to do any, am sliding down hill since. I would rather have the liberation then Tysabi as the risks scare the heck out of me! But your looking great! :) along with so many others! Thank you for all you do xoxo susan

  • @christinedavi
    @christinedavi14 жыл бұрын

    Angela, I pray you make the right decision on you meds and treatments. Enjoy the fresh air and take deep relaxing breaths when you can. Love, Christine

  • @angelusa73
    @angelusa7313 жыл бұрын

    @Jessica1963Forester thank you. I didn't have the time or the strengh to look for this type of information and I wasn't aware about it so thank you fo sharing this with me and withe the many patients that are affected by this horrible disease. Thank you again and take goo care, hugs Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @vbeachy Dear Vern, we learn so much from you and from your videos and you are a good example of strengh to all of us! We have to take risks in life and this is one of the many risks we take. We don't want to, but we have to. Hopefully, very soon, we will have better choices and less dangerous treatments that we can use to get better. I can't wait for that day to come! Thanks for writing and for being strong for all of us, warm hugs Angela

  • @irishbear76
    @irishbear7614 жыл бұрын

    Good video. Please take good care of yourself. I am very pleased that you have no new lesions. Mark

  • @angelusa73
    @angelusa7314 жыл бұрын

    @33rojrsr Dear Rick, thank you for writing to me and for being so kind! It comes easy for me to open my heart to others and I love sharing hope with people that I meet in many ways. My heart, my prayers and my thoughts are with you, your son and your entire family. Please, count on me for anything! I am here for you all! :) warm hugs Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @3caroladams Dear Carol, I am so glad to hear from you again! Thanks so much for writing! I am so sorry that I didn't get to write to you before. I was away for Easter and I went to see very special friends and I got back home yesterday and I saw your sweet message. I hope you have a nice holiday and that you are doing well. About CCSVI, you will see that, very soon, we will all be helped! warm hugs, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @qualisarx Dear Daniel, I am sorry that Tysabri didn't help your cognition. I think this is the most frustrating symptom ever!!!! I can't wait to see your next update! Hugs, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @13Harms Dear Harmony, yes, it is hard to have to gamble every month and it will be more difficult every time we learn about the many more people that are dealing with PML. We will probably relax more after we get the Liberation procedure! I agree with you: let's continue dreaming and let's take a day at the time...We are in this together, dear Harmony! hugs, Angela

  • @angelusa73
    @angelusa7313 жыл бұрын

    @Jessica1963Forester I have been lucky with this symptom, I guees because PML made me incontinent bu then, after months of dealing with it without taking other aweful drugs, the problem resolved by itself and now I am okthat way. I am glad that every patient reported better results and got better this way. This is good news, thank you for sharing them with us, hugs, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @medad1 Good luck to you too, dear Mody. I hope that everything will go well for you too! Next week I will have the 15th infusion...let's keep praying for each other and keep hoping for the best until the Liberation procedure comes for all of us! It's nice to receive your messages! Take care, hugs Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @WithCourage2008 I am glad that you wrote me two messages because now I know that you got some good news too! You don't have any new lesions either and this is great!!!!!!!!! We are giving a good break to our brains right now but we are going to have to stop taking this drug at some point because the risk of PML is going to increase, unfortunately. But, right now, let's celebrate the fact that we are "new lesion free"!!!!!!!!!!!! :) Ciao! Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @irishbear76 Thank you, dear Mark. I am very grateful that I don't have any new lesions. I just wish that people wouldn't have to risk so much to get to this point. Hopefully, the Liberation treatment will be the next treatment for all of us! Thanks for writing and have a good afternoon, Angela

  • @13Harms
    @13Harms14 жыл бұрын

    It's hard having to deal with such a gamble all the time. I'm doing really well on tysabri, but I do get a bit more nervous with each infusion. It would be so nice to be able to relax because the treatment didn't come with such a risk. Here's dreaming and we'll see what happens :o)

  • @Jessica1963Forester
    @Jessica1963Forester13 жыл бұрын

    A universal benefit reported by every patient has been the recovery of bladder control. Most MS patients have various bladder control symptoms that include urinary urgency, incontinence, nocturia, or urinary hesitancy as a result of the disruption of electrical impulses from the brain to the nerves and muscles that are involved in emptying the bladder (pudenal nerve, urethral sphincter, detrusor muscle). Log on to ccsviclinic. ca for more information.

  • @angelusa73
    @angelusa7314 жыл бұрын

    @WithCourage2008 Dear Anna, KZread in changing too many things lately and it's hard to know when we are writing a message after watching each other's videos! Well, I am glad I got to receive two messages from you! :) I know that Tysabri is working well for you too and I hope that it will continue to help all of us for as long as we will take it! Thank you for the wishes, take good care, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @y2ok Thank you, dear Martha, for writing to me and for subcribing to my channel. I hope you are doing well. Thank you for the blessings and for being my new friend :) Hugs, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @laurenvparrott Dear Lauren, I missed you!!!! It's good to see you here :) Sometimes, I think that I might be doing too many things at the same time and that my cognition gets worse at those times. I am not sure but I have to pay more attention and try to figure out why it happens and why it comes and goes many times a month and while the problems last for so long. I will figure it out! (I hope!). You are always very sweet and I am glad that you wrote: thinking of you makes me smile! :)

  • @kezzcass
    @kezzcass14 жыл бұрын

    PML is a such a concern :o( I was looking at the stats. It seems to me (where I am anyway) the odds of someone in the general population getting MS is almost the same risk as someone taking Tysabri getting PML after 2 years! And I never imagined I'd have this disease! That is a hard thing to swallow (or infuse!) when, like me, I had 2 relapses whilst on it. As you know I had the procedure, will stay on T at least til my next review end of April. I am so undecided!! Kerri

  • @angelusa73
    @angelusa7314 жыл бұрын

    @christinedavi Thank you, dear Christine. Sorry for confusing your name the other day! I lose my mind sometimes! :) I will be breathing the fresh air and I will do my best to relax, I promise! Take care and thanks for being my friend, Angela

  • @donotconcede
    @donotconcede14 жыл бұрын

    I am already to go to georgetown in May! Thanks for the video. I miss you. I've heard nothing from buffalo :( I do look forward to you getting better. Call me, I've got so much to talk to you about. Love you! Judy

  • @angelusa73
    @angelusa7314 жыл бұрын

    @kezzcass Dear Kerri, I completely understand why you are confused and why you are unsure about what to do with Tysabri. I so hope that the Liberation will be your cure and that you won't have to take this drug any more!!I pray for this every day because it will make me so happy to know that one less person will have to take this risk! Maybe, you will feel better now that you had the Liberation! Lots of hugs, Angela

  • @Jessica1963Forester
    @Jessica1963Forester13 жыл бұрын

    A group of Canadian patients just back from Noble have reported similar results. “I can actually see what I thought were long-dead muscles forming in my feet” said Larry Vermeersch of Kenora, Ontario. “My balance is back and I’m walking without a cane. I’m a pretty hard guy to convince, but getting these two procedures together has made me a believer. I’m looking forward to the physio ahead because I can feel everything coming back.” Log on to ccsviclinic. ca for more information.

  • @angelusa73
    @angelusa7314 жыл бұрын

    @cristinadreamer Dear Cristina, I wait for your messages every time I make a video because, with every word you write me, you bring me comfort. I appreciate everything you said and you wish me wonderful things that I am dreaming about every day! I will fight as much as I can and I will continue praying for everyone that is taking this drug and that is dealing with MS. Thank you for being a good and special friend, hugs Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @catimini34 Dear Crystele, MS is such a mysterious disease and it is so hard to diagnose it at times! In my case, it was very easy and quick but I have heard that so many people had the disease but they never got a diagnoses until so much time later on in life, just like it happened to you. Please, watch the other videos where I mention CCSVI and Dr. Zamboni's discovery and learn more about it. CCSVI is bringing so much hope to MS patients all over the world! Take good care! Bises, Angela

  • @angelusa73
    @angelusa7314 жыл бұрын

    @donotconcede Dear Judy, Buffalo called me twice already and they said that, next time, they will call me to schedule an appointment so I can go and get the tests done. Hopefully, they will contact you soon. I think it's great that you will go to Georgetown. It is so much closer to you and they are already doing the Liberation procedure!!! I will call you soon!! kisses, Angela

  • @Jessica1963Forester
    @Jessica1963Forester13 жыл бұрын

    After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. Log on to ccsviclinic. ca for more information.

  • @angelusa73
    @angelusa7314 жыл бұрын

    @ThePennygirl Dear Susan I know how you feel about Tysabri and I do think that it's going to help you slow down the progression of your MS. I think that taking this medicine for two years should be ok and then we can get the Liberation procedure! I hope you'll write me if you have any questions. I am leaving to go to Texas in two days and I will be away for 8 days but I can answer to your questions when I come back! I hope you had a wonderful wedding! Best of luck, hugs Angela

  • @Jessica1963Forester
    @Jessica1963Forester13 жыл бұрын

    Dr. Hemangi of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”. Log on to ccsviclinic. ca for more information.

  • @OlgaMesh
    @OlgaMesh8 жыл бұрын

    Maybe, but, I don't think CCSVI going to resolve a problem, for sure not!

  • @angelusa73

    @angelusa73

    8 жыл бұрын

    +Olga Mesh We don't yet if it will be the cure we are all looking for. I will never happened until drug companies exists. BUT WE CAN'T LOSE HOPE because where would we all be without believing in something? The studies done showed good things but of course we need more studies and a lot more work! sorry for being so late responding to your comment. I used to be much better at it and I am not so much now and it's not for health reasons, thank God. Life is changing and I am changing with it. Sorry for responding so late. Please take care. Have a good Christmas! best wishes to you and to your loved once, lots of luck, Angela :)

  • @Jessica1963Forester
    @Jessica1963Forester13 жыл бұрын

    Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on KZread v=jFQr2eqm3Cg. Log on to ccsviclinic. ca for more information.