Tysabri Recovery Series Infusion #41

[ThePennygirl]

Meant to say Thanks! And that the un insured need some vocie here!! I pray that some action in this area happens... so many TOO many need some help.

[vbeachy]

Well, I am uninsured and, yes, something needs to be done to help them. That said, however, I think the current proposals tend to throw out the baby with the bathwater.

[ThePennygirl]

thanks

[ThePennygirl]

Great Video Vern as always I enjoy so much hearing about ppl's success and thier therapys, it is so postive.

I only wish medi cal or Co. Aid (what I have) would approve these drugs! Worst part my docs can't see me any more for they do not take it (Co.Aid) and no docs taking ppl with it!

AHH to be lost in the system in this great country! I will spare my naughty words!

But your spirit always brings me joy! :)

[vbeachy]

Thanks Susan...I appreciate the comment and I hope one of these days you will get "found" in the system.

[andie221]

May I say that is great that the distributors of Tysabri finally got you to be an advocate for this drug - being a long time youtuber with numerous videos, a history here of MS and being a REAL individual recording his experiences of this drug over these past 18 months....a long time coming this! I watched them from the start and when Tysabri was approved here in Australia - these made me take notice!

[vbeachy]

Thanks Andie!

[angelusa73]

Dear Vern,

I completely understand what you said about Tysabri working for you and how you don't worry about PML because you are feeling so good and the drug is allowing you to walk so well and to live better!

I am glad that you believe in CCSVI too and that you would like to get tested. I hope this treatment will help all of us someday soon!

Congratulation on your book (let us know when you will find an agent and when it will be out in the stores) and take good care!

Hugs,

Angela

[vbeachy]

Thanks Angela! It IS exciting to see all the movement forward on CCSVI.

[qualisarx]

Thank you for the update Vern! Great video and the cummunication is wonderful.

[vbeachy]

Thanks Daniel!

[kezzcass]

Wow Tysabri advocate - that's fantastic Vern. I like your vids - always so encouraging. Kerri

[vbeachy]

Thanks Kerri!

[5ChiLanta]

Hey Vern -- Congrats on everything! I enjoy watching your vids!! I just had my 13 or 14th infusion but I had a problem -- I switched insurance which took too long to approve my therapy so I missed my scheduled January infusion -- I just got mine on Wednesday and I have been feeling horrible ever since -- crazy headaches and back pain -- I am trying to ride it out -- I can walk and stuff but I feel like crap -- what to do? I was feeling so close to "normal" b4 missing my infusion -- Brandi

[vbeachy]

Brandi;

Hmmm...I have never had a headache or any other pain after taking Tysabri, just really tired after the infusion, but I am used to being tired because of the disease, so I think it is the 'activity' of the infusion that makes me tired.

I hope you get to feeling better soon Brandi. Thanks for your comment!

[medad1]

Thanks Vern for updates

I had my 11th Tysabri infusion 2 weeks ago

I wish you a good luck Mody :)

[vbeachy]

Thanks Mody and good luck to you too!

[irishbear76]

Vern,

Good luck with getting your wonderful book published.

I am also glad to hear that you will be speaking as a patient advocate for Tysabri.

I know you owe that medication alot (and the good Lord as well)

Be well and winter is only temporary,

Marl

[vbeachy]

Thanks Mark!

[guitaraficionado]

Thanks for the update, Vern. It's wonderful that you're so responsive (positively) to Tysabri! I hope that being a "Tysabri Advocate" is a good experience for you.  And, good luck with finding a great agent!

Also, treatment of CCSVI looks like a promising treatment for those with RR MS. But, research published by Zamboni et al. in 2009 (J of Vascular Surg.?) showed that it did not help people with SP MS, which I've got (and for people with PP, not much, if at all, if I recall correctly).

[vbeachy]

Thanks! I have SPMS and I, too, am excited about the possibilities of CCSVI.

[MSVlogSupport]

It's always great to hear that your infusion went well Vern, I think you will be a great advocate for Tysabri. If I could I would get on it right now.

Since I have am not respsonding well to Avonex and relasping on it and was relasping on Copaxone as well.

Things are looking up for CCSVI as far as getting testing done, at least for those who have insurance.

Hoping that a study will be done closer to me since I am one of the many that fall though the cracks.

Take care,

Andrea

[vbeachy]

Thanks Andrea! I never responded well to the ABC drugs and I am glad Tysabri came along. It has been nothing short of a miracle drug for me.

The movement on CCSVI is amazing to see.