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Tysabri-A personal history
Posted by: Westenhizzel

Video duration: 194 seconds

I have been diagnosed since 12/13/02 (not 05 like I said, an MS brain fart) and have been on Beta and copaxone in the past. I took Tysabri before it was taken off the market 2 years ago. These videos are of my many infussions to come. Started 10/6/06.

Related: avonex, beta, copaxone, multiple, rebif, sclerosis, tysabri

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TY-7
Posted by: Westenhizzel

Video duration: 339 seconds

#7-I forgot to add that the spascity is better. Probably becuase I changed to Baclofen.

Related: avonex, beta, copaxone, multiple, rebif, sclerosis, serone, tysabri

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Latest comments made on this video:

I am doing OK. Just ...
By: Westenhizzel. on 24 Nov 08, 19:51:28
I am doing OK. Just OK, but better today. I am on Rituxan now and have had 7 infusions so far. My next two are in late December. I believe it is helping and have several things I can now do that I have not been able to do for a while. I hope that translates OK. Have had a cold and been down. Had some oral steroids and feel better.

HI Gary, I always ...
By: senseis1. on 22 Nov 08, 19:46:40
HI Gary, I always liked to watch your videos and I wonder how you are doing recently. Greetings from Germany Martin

Unfortunately, I ...
By: Westenhizzel. on 02 Aug 08, 00:11:11
Unfortunately, I had a bit of an MS brain fart that day. Please excuse my English or better yet my ugly American comment. My DX year was 2002. But it was 12/13. I stopped the Tysabri last summer because it was not doing anything. I just had my 4th infusion of Rituxan last week. I think it is helping. I will start my video up again. Thank you for caring and making a comment. Sorry to hear about your recent relapse. Sol-u-medrol works pretty well for me.

December 13 is my ...
By: teslagirlM. on 01 Aug 08, 20:57:08
December 13 is my D-day too. I think you said yours was 2005. Mine was 2004. I know this video was added a year ago, and I haven't seen any since? I hope you are doing well. Keep up the fight.

Hey Gary I was ...
By: portobello666. on 31 Jul 08, 22:40:02
Hey Gary I was wondering how you're doing - are you still on Tysabri and have you seen any improvement?

I never had any ...
By: Westenhizzel. on 12 Jun 08, 16:04:32
I never had any problems with steriods.

question did u ever ...
By: jermeal385. on 12 Jun 08, 06:23:01
question did u ever have any bad side effect with steroids i did ?

I would still try ...
By: Westenhizzel. on 13 Apr 08, 02:06:25
I would still try it. It may help. I have seen what it did for Vern, who is on youtube. I just wanted to share my experience.

there's a next guy ...
By: jermeal385. on 12 Apr 08, 05:56:27
there's a next guy on here he said after his thirn infusion of tysabri he sarted walking again i was thinking bout taking it my self i know it vary but nothing else seem to be working i'm 21 hey

Be real, tens of ...
By: 7mumfred7. on 29 Sep 07, 02:18:56
Be real, tens of thousands of people can't be wrong. Its a big cliche to say that all the drug companies want is money, but there are huge differences between drugs for minor headaches/calming nerves (which sell to nearly everyone) and those targetted at halting disease in the small minorities who get them. Besides, there is nothing else, so keep trying, keep kicking. I mean they cured smallpox eons ago, in this century they will cure everything else.

Your always best ...
By: sploggon. on 16 Sep 07, 09:58:07
Your always best talking to others who have been ill for years and wont have anything to do with these so-called wonder drugs because they don't work,they just make you worse.

I'm sorry to hear ...
By: 7mumfred7. on 15 Sep 07, 15:33:41
I'm sorry to hear that. I have issues myself, and so I begin to know how you feel. If anyone speaks German, I see there are 5 or 6 new videos that describe Tysabri cases (I presume they are more successful than yours, but they really need sub-titles). Good Luck and here's hoping your next video has good news for us.

I just never had ...
By: Westenhizzel. on 15 Sep 07, 03:20:45
I just never had the Ty slow it down enough and felt I needed to try the Cytoxen. You can only take it for 3 years, so I figured it was time before I lost any more neuronms. Cytoxen is chemo for MS.

Did a search on TY- ...
By: Entropy56. on 14 Sep 07, 04:01:58
Did a search on TY-8 and guess what I found? Looking forward to the real TY-8 vid. I've had MS now for 10 years. I saw you walk in #1 and feel like I am going to be like you in about 2 years. Hope you find something that works because I'm right behind you.

I am surprised to ...
By: 7mumfred7. on 14 Sep 07, 02:29:08
I am surprised to hear that, because around Video #4 you were doing great, I really hoped that you would make a breakthrough. May I ask what is Cytoxen, and did it come recommended by your neurologist ? Also please do let us know how you are doing. Thanks & Regards.

Thanks. Next update ...
By: Westenhizzel. on 14 Sep 07, 01:16:35
Thanks. Next update I will be taking cytoxen. I stoped the Ty in Aug.

Am looking forward ...
By: 7mumfred7. on 13 Sep 07, 23:27:16
Am looking forward to your update, and I sincerely hope that you are making progess. All the best.

It is for all the ...
By: bikhod. on 17 Jul 07, 04:11:41
It is for all the people who have problem with mobilty. I am taking tysabri and baclofen and also two days of physical therapy. The combination has done a lot of good for me. I can walk better I was also using a walker before.

Gary I am sorry to ...
By: 7mumfred7. on 06 Jul 07, 23:47:40
Gary I am sorry to read this, I was hoping for better things. Hopefully your life will get some good fortune.

Thats great. I was ...
By: Westenhizzel. on 03 Jul 07, 19:51:49
Thats great. I was hopeing to get some relief too. But not in the cards for me. Gary

hi, The bottom of ...
By: bikhod. on 03 Jul 07, 17:59:18
hi, The bottom of my right foot became numb and I completely lost the sensation for the past five years. About 4 months ago I started Tysabri and it has done wonders for me. The numbness has resolved about 85-90 %. I can walk better and my energy and focus is much better. I saw my neurologist and he scored my condition about 4.5/ 5.0. Where as before the treatmen it was 3.5/5.

I also use a walker ...
By: VioletMathers. on 21 Jun 07, 18:17:04
I also use a walker.. I was DX in Jan have a particularly agressive form of RRMS. I feel stiff most of the time hands feel as if they are in sand so do my feet. Just in these last few days my inner thighs have bands of numbness not sure if I am flareing or it is just the heat doing me in. but Gary I thank you so much for this post. I am not sure how to answer you by email because I am using my daughters little you tube thing..

How have your legs ...
By: Westenhizzel. on 21 Jun 07, 14:49:59
How have your legs gotten worse? Do they feel more dead? Can you still walk on them? I use a walker to get around. Gary

Dear Gary, Thank ...
By: VioletMathers. on 21 Jun 07, 04:20:44
Dear Gary, Thank you so very much for doing these videos, my husband and I are waiting for #8. I have only been Dx since jan 07 this year. I have a particularly tough case of RRMS. I have leak in my blood brain barrier keeps attacking the same areas each time.. I have had 3 major flares 3 months apart and right now I am trying to decide weather to take Tysabri or rituxan.. please let me know how you are doing. I am in Southern Ca.

I have been trying ...
By: Westenhizzel. on 18 Jun 07, 20:21:40
I have been trying to figure out how to contact you. I have now had my 9th infusion and I am still going down hill. My legs keep geting more numb or dead as I say. Please tell me what is going on with you. My e-mail is if you would like more privacy. Gary

Ty-2
Posted by: Westenhizzel

Video duration: 210 seconds

My second infussion.

Related: avanex, copaxone, ms, multiple, scelrosis, tysabri

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Ty-3
Posted by: Westenhizzel

Video duration: 295 seconds

My 3rd infussion.

Related: avonex, beta, multiple, rebif, sclerosis, serone, tysabri

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Latest comments made on this video:

I was on Rebif for ...
By: qualisarx. on 08 Jun 08, 01:11:40
I was on Rebif for 1 year and have now gone on tysabri. Things are still delopeing slowly but I am still optimistic!

I sent you a ...
By: Westenhizzel. on 17 Aug 07, 03:25:52
I sent you a comment the other day. I have had 11 infusions but continue to decline. I was hoping for results like yours. I had invisioned walking as well as you. Congrats Looks like chemo is next. Gary

Gary; I have had ...
By: vbeachy. on 16 Aug 07, 23:40:58
Gary; I have had MS since September of 1998, and have taken Tysabri since last November. My videos chronicle a much better response than what you have. I have them on YouTube. I don't feel any better...still got the buzzing and burning, but I can walk. The fatigue is still bad (extremely), but I am doing well. No spasticity!

Thank You
By: Westenhizzel. on 04 Mar 07, 21:16:07
Thank You

Dear Gary - Thank ...
By: guitaraficionado. on 04 Mar 07, 19:08:34
Dear Gary - Thank you so very much for your videos. I like your new set of wheels (your "rollator") -- (my doctor just wrote a prescription for one for me). I wish you the best!

tanx 4 sharing what ...
By: mslisafleming. on 14 Feb 07, 00:03:26
tanx 4 sharing what ur going thru wit d tysabri, im on copaxone at the moment seems to be working well no major relapse for d past year just slight paralisis and loss of vision and what not during d year - nothing too major, just akward wit college as you no urself how u look healthy but feel awful!!

I hope you are ...
By: kcsportsfan. on 28 Jan 07, 10:03:16
I hope you are doing well on your next infusion. Please provide us with a comment on your progress. Would love to see the next video. My guess is the next few infusions will help you. Hopefully the walker becomes a thing of the past.

Dear Gary, I am ...
By: LindaNY11. on 27 Jan 07, 02:01:26
Dear Gary, I am sitting back and observing this drug. I am presently on Rebif. I have the weak legs. Left Leg is worse. Thank You so much for doing this. I am following you and I am looking forward to seeing you improve. I totally have FAITH that we will be ok. Mt husband says to me "FEAR will keep you up all night long but FAITH is one fine pillow. God bless xo Love Linda

Let me add to the ...
By: drodga. on 10 Jan 07, 23:10:40
Let me add to the many, THANK YOU! and sincerely the best of luck! I hope you enjoy all the syccess you hope for with this drug! I feel as though I can't win with my MS and am soon to do my weekly jab that I detest! Wish there were betetr options out there so much! Andy (27)

Can you tell us how ...
By: kcsportsfan. on 08 Jan 07, 12:37:45
Can you tell us how you are doing after the 4th infusion? I am hoping to hear that things are starting to get a little better with the legs. Good luck to you on your Tysabri journey. Hope is a wonderful thing.

So now I need to ...
By: Westenhizzel. on 06 Jan 07, 22:55:42
So now I need to worry about my weight. Damn

Thank You
By: Westenhizzel. on 06 Jan 07, 22:52:32
Thank You

Nice ride! :) Just ...
By: alucheni. on 06 Jan 07, 18:07:01
Nice ride! :) Just saying hello & thanks for sharing again. I look for ya every month. Curious, have you ever tried the "Best Bet Diet"? The inventor doesn't seem to be selling anything so I'm giving it a shot. Hopefully you will keep improving.

Good luck. Let me ...
By: Westenhizzel. on 04 Jan 07, 18:54:29
Good luck. Let me know if your Dad has questions.

Thank you
By: Westenhizzel. on 04 Jan 07, 18:53:32
Thank you

I'm following your ...
By: EmilyElzbth. on 04 Jan 07, 16:50:04
I'm following your progress Gary! I've shared your videos with my mother and father and we are going to be researching Tysabri.

Thanks for sharing ...
By: nlparr1. on 04 Jan 07, 08:45:44
Thanks for sharing tysabri info, Gary. I wish you good success in this endeavor.

Sorry, heres TY-456. Brain fart
Posted by: Westenhizzel

Video duration: 349 seconds

Latest comments made on this video:

Thanks very much i ...
By: deauxwolf. on 03 Jan 09, 23:17:30
Thanks very much i will. I will add you to a friend and subscribe thanks very much for your reply! Now i have to sleep because its 11:15pm and i am 13 lol. Thanks any way! (Aiden) xXx

I am soory to hear ...
By: isa2222. on 03 Jan 09, 23:13:33
I am soory to hear your grief I have MS too if you need to talk , I am more than happy to heaqr or read your story .XXX isabella

Hi my name is aiden ...
By: avrillavigneissexy. on 05 May 08, 14:18:47
Hi my name is aiden and i am 12 my mum died last year of multiple sclorosis because of a desese called multiple sclorosis and she dident have any medical treat ment.! (shame i am upset every day, i need some one to talk to sometimes!) (aiden) XXXXXXX

hey wassup been ...
By: jermeal385. on 18 Apr 08, 03:31:26
hey wassup been watching your vids hut any ways how u doin with the whole ty stuff now

just wanted to see ...
By: jermeal385. on 20 Dec 07, 21:06:16
just wanted to see how this youtube thing works

I am with you, good ...
By: villagodzilla. on 24 Nov 07, 10:25:34
I am with you, good luck.

My nurse and I ...
By: drodga. on 04 Oct 07, 10:40:00
My nurse and I think I'm having a pretty good deal with Avonex and Baclofen. (Stopped obviously relapsing). But I never have full MRI scans and I'm told I won't have to have one unless my symptoms suddenly flare up unexpectedly. I don't know, things wree still easier for me a year ago... Andy, UK.

Good luck. I had no ...
By: Westenhizzel. on 20 Apr 07, 17:25:36
Good luck. I had no bad side effects with Ty. Beta was another story. I will post new video today. Gary

Hi, I am starting ...
By: elizabethzen. on 20 Apr 07, 00:35:15
Hi, I am starting Tysabri next week. My expectations are not very high that I'll have dramatic results. My doctor has anther patient who has been on Tysabri for about 6 months without much in the way of results apparently. I had two doses of Rebif (bad reaction to that) and I don't want anymore to do with self injections. Still hoping against hope that Tysabri will help until there is a good oral medication. Have you had dose 7? How are you? Wish you all the best. Elizabeth

Hi, I am starting ...
By: elizabethzen. on 20 Apr 07, 00:27:14
Hi, I am starting Tysabri next week. My expectations are not very high that I'll have dramatic results. My doctor has anther patient who has been on Tysabri for about 6 months without much in the way of results apparently. I had two doses of Rebif (bad reaction to that) and I don't want anymore to do with self injections. Still hoping against hope that Tysabri will help until there is a good oral medication. Have you had dose 7? How are you? Wish you all the best. Elizabeth

Gary, Have you ...
By: kcsportsfan. on 12 Apr 07, 08:48:58
Gary, Have you done an MRI recently? I would love to know how the lesions are doing. Sometimes the symptoms don't do a lot but if you can stop further damage it would be a win. If you have a few minutes to respond I would appreciate it.

I'll try. Hell I ...
By: Westenhizzel. on 30 Mar 07, 02:00:41
I'll try. Hell I will. Thanks, Gary

Thank you, Gary
By: Westenhizzel. on 30 Mar 07, 02:00:01
Thank you, Gary

I think I am going ...
By: Westenhizzel. on 30 Mar 07, 01:59:15
I think I am going to try the nov. too. If I do I'll keep letting folks know about it. I just get tired of all the lies I have read from drug companies. If we can't be honest with each other at this point in our life when will we ever get right with ourselves. I am going for number 7 next week. Thanks for your comment. Gary

Thanks
By: Westenhizzel. on 30 Mar 07, 01:54:31
Thanks

Were all pulling ...
By: worktosser. on 26 Mar 07, 04:46:19
Were all pulling for you G. Thanks+ for keeping us informed.

Hi Gary I just did ...
By: elliot1973. on 25 Mar 07, 00:08:32
Hi Gary I just did #5 and I'm pretty much in the same boat-Tysabri hasn't helped me at all. If anything I've lost a lot of mobility since I started on it. I'm begging my doctor to put me on Navontrone but he wants me to go to at least dose #6 and that will be it for me considering how badly this stuff has set me back. I also heard all of those remarkable stories about Tysabri but those of us with mobility issues don't seem to be faring as well. Thanks for doing the videos and keep us posted.

Thank you for the ...
By: guitaraficionado. on 20 Mar 07, 23:33:38
Thank you for the update, Gary -- I was wondering how you are doing. I'll keep on with prayers for you, and hang in there!

Hang in there Gary. ...
By: NeboDirect. on 15 Mar 07, 06:14:56
Hang in there Gary. Said a prayer for ya! Keep your video's coming and your spirits up!

Hi Gary! Sorry you ...
By: drodga. on 14 Mar 07, 00:58:30
Hi Gary! Sorry you don't feel like it's working out too well for you, and you're a bit disappointred with the results/lack thereof. You can only keep trying to beat tis as is true for everyone with MS! Avonex is working out ok for me so far, I never expected too much! Wish you lots of luck with your teatment and thanks for sharing! Andy, UK

Consider removing ...
By: alucheni. on 13 Mar 07, 03:39:14
Consider removing gluten, dairy, & legumes from your diet. Add 2000IU daily vitamin D, 1000mg calcium, & 500mg magnesium (do all three - not just one or the other). Add 2grams of fish oil (yeah it's a lot) daily. Kill all pop & candy, all fast food, and eat fish + lean chicken for meat. I can't tell you how much of an improvement I've seen. Fatigue is down to 50% & tingling is much improved... just thought I'd share. Absolutely safe.

Thank you Lauren. I ...
By: Westenhizzel. on 12 Mar 07, 00:20:18
Thank you Lauren. I am a day trader and have seen your comments on the Elan stock board. I have made money on Elan for the past few years. I buy it back when it comes down then sell it when its up. Try not to be such a pumper. Gary

I posted the same ...
By: Westenhizzel. on 12 Mar 07, 00:16:31
I posted the same video twice, thus the brain fart.

Thank you
By: Westenhizzel. on 12 Mar 07, 00:15:49
Thank you

Good luck Emily. I ...
By: Westenhizzel. on 12 Mar 07, 00:15:28
Good luck Emily. I understand the stuborness. My kids say the same thing about me.

Block!!!!
Posted by: Westenhizzel

Video duration: 73 seconds

If you have no friends and you are bored, now you can buy brand new block. Here is the commercial for it!

Related: block, stupid

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