My MS Journey: Relapse

[2ndSamuel710]

There is now a Reformed Multiple Sclerosis Society that is urging for the medical community to check out Dr Paolo Zamboni's discovery that MS is caused by poor blood drainage from the brain. The answer to restore this blood drainage from the brain is angioplasty. Watch the before & afters for this surgery called CCSVI on youtube- simply amazing. In just 24 hours a world of difference. Standing on one foot eyes closed in just 24 hours!

[kezzcass]

@2ndSamuel710 I know all about it - check out my latest videos :) Thanks

[burgerhouse111]

is this relapse after your ballon? and if so how long after i gottta go have a ballon put it next month

oh and thanks for all your info xx

[kezzcass]

@burgerhouse111 Nah this was a vlog for about 10 months ago. No relapse since the procedure which was 9 weeks ago. Kerri

[gekiryudojo]

When I was in hospital I was not allowed to have sleeping tablets with methylprednisone it apparently interferes with it, for the metallic taste of methylprednisone I chewed fruit pastels they worked a treat!

[gekiryudojo]

Methylprednisone yep had that going though my veins tasting the metallic taste the super high hypo, the hunger insomnia then the good stuff double vision gone in 3 hours optic neuritis

going legs working brain working balance working Lhermitte's Sign going good stuff!

[ThePennygirl]

Bwst too you ! am prayling many!

[kezzcass]

Thank you so much Pennygirl! I have been feeling the love! Kerri xo

[nicv11ita]

Hi Kerri, thinking of you and hoping for a quick recovery! Totally sucks you had another one so soon. Prayers coming right up!

[kezzcass]

Thanks so much - doing much better now. Appreciate your thoughts xo

[WithCourage2008]

Hello! I am starting Tysabri in about a week! I was also dxd last September. Copaxone was not working for me! If I were in your position, I would start Tysabri. I found out that in its post marketing (after 2006) only 10 people got PML, but a total of 52,000 have been taking it in its post marketing (according to the MS society). That is small!

I do have a question for you! What lab tests did you have to take for Tysabri? My doctor never told me to do any tests, which bothers me quite a bit.

[kezzcass]

Hi, hope all goes well with your first infusion :-) - let me know!

Re lab tests: they were all to test for any pre-existing conditions; TB (chest xray) then all the normal bloods including things like HIV, Hepatitis, liver, etc. I can't remember it all but there were a lot of vials taken! Perhaps it would be worthwhile mentioning to your Neuro before your first infusion? Kerri

[WithCourage2008]

Thank u so much 4 the information! I will definately mention these tests to my neuro!

I will definately let you know how Tysabri goes! I will also be making videos after each infusion. I think that you and some others might find it helpful!! :) Take care!

[angelusa73]

Oh, Kerri! I am sorry you have to go through this!

I completely understand how frustrating this must be. I went throught it too and I have been relapse free because I have been taking Tysabri for 5 months but before this, I was just like you...very active!

Tysabri might help you too just like it has been helping so many of us. You are always in my prayers.

I wish you the very best and take good care of yourself.

Hugs,

Angela

[kezzcass]

Thanks Angela, so much positive feedback on Tysabri I feel hopeful that I will see some improvement. Kerri xo

[carlogiovanni]

Thinking off you Kerri it sounds like a challenge, keep your chin up my dear (although I'm sure you are) xxx

[kezzcass]

Thanks for your thoughts - chin keeping up! XX

[kezzcass]

G'day Kylie - I know - this is so frustrating. At least I feel like there could be a change coming... I can't wait to feel normal again!! Thanks for sharing your journey with me - it really helps. xo Kerri

[teslagirlM]

Hi Kerri, Sleeping tablets! Good idea! I am sorry you are going through another bloody relapse. It's a disappointment when you think you are okay, and you come back from an appointment with crap news about your own health. I am thinking of you! Let's talk about Tysabri, shall we? email me! I'll give you some coins, by the way!

Marlo

xx

[kezzcass]

Yes - I am finally getting that I have to ask for what I need (re sleeping tablets) and make things as easy as I can (!). Will email soon. Kerri xo

[missalgernon]

Oh Kerri, Im sorry to hear you arent doing so well. I could kind of tell that from your last video even though you said you wanted to do a video while you were feeling okay!

My neuro has recommended tysabri too so Im on a waiting list. Will send you an email about the few things I have found out. Im feeling really hopeful and positive about it!

Amanda.

[kezzcass]

Hi Amanda, so good to hear from you. I don't know what feeling okay feels like these days! But I hope to soon! :-)

[dmplaura]

Tysabri may be the choice for you hun. That's a lot of relapses in a short period of time and I'd be looking for other options.

You're in my thoughts, I know you'll make the right decision in this! :)

[kezzcass]

Thanks Laura. I think so too :-)

[vbeachy]

Hi Kerri;

Sorry to hear about a relapse. I must say that I can now walk on mountains and grab the sun with Tysabri. Some other people I know here on YouTube say it's not for them and I understand that. For me, however, I do have my life back.

Good luck in whatever you decide and my thoughts and prayers are with you!

[kezzcass]

I am so pleased to hear you say that you can walk on mountains!  Have spent a little time hearing other's stories and I feel really encouraged. Kerri

[wendell3308]

Kerri,

Hope that your neurologist has informed you to take a Claritan about 3 hours before your infusion. I'm told that the largest Tysabri infusion center in Atlanta requires that of all of it's Tysabri patients. Something about helping to lessen one's reaction to the infusion. Check with your neuro on this.

Tysabri helps release your stem cells from barrow marrow. Works for most people. I pray that it'll work for you.

[kezzcass]

Thanks, will ask Neuro about what to take beforehand - I have an appointment with him before he books me in for my first infusion. I am praying it will work for me too!

[AirstreamAdventure]

You are correct. I got to the MS Center of atlante, it's required to take a claritin and 2 extra strength Tylenol 1 hour before infusion. Getting my second one this week!

[eclipsedeyes]

So sorry that you've had another relapse, but I'm really glad your neuro is being proactive and trying to help you the best he can. ((hugs))

Re: spasms in your abdomen, I've been having these as well but only occasionally, they're very uncomfortable!

Thinking of you,

Frances

[kezzcass]

Hi Frances, It feels good to know the Neuro is watching things so closely and I can relax a little. I have had spasms in the abdomen on and off for a while but this is the first time it has been so tight and painful. My thoughts are still with you too at the moment. :-) Kerri

[wachteropdemuur]

And I hope that Tysabri will help you. For me there is no medication anymore, no Tysabri. But may be it will help you and you will be able to climb mountains ;-)

[ToriUTK]

Hey Kerri,

I have only heard good things about Tysabri. I had a relapse similar to yours. The squeezing is AWFUL I feel for you. I took about 4 days before I noticed any change with the prednisone but it eventually stopped. They call it the "MS HUG". HA not like any hug I have ever had.

Anyway keep smiling and take care.

We are all thinking about you!

xoxox

[kezzcass]

Hi Tori, Yeah - hug is not the word. Irishbear related it to be like being suspended from the ceiling in a harness - that is more like it! Thanks for your thoughts. XX Kerri

[ernahnotme]

Thanks for the update, good luck with your choice with Tysabri.

Cheers, Ivan

[kezzcass]

Thanks Ivan, you haven't posted a vid for a while, how is Tysabri going for you?

[ernahnotme]

Yea, my Tysabri is going alright, had my 13th infusion a few days ago, all is going well

[wachteropdemuur]

Sad to hear that you have methylpred again. I hope it will work so you will be better and you will recover from your third relapse.

[kezzcass]

Yes - and I was just saying to you that I had had my quota of Methylpred. Hope it works quickly too. XX Kerri

[philruff1]

Thanks for your message. Hope your climbing mountains soon. Take care. Philip

[kezzcass]

Thanks Phil, it is funny I used to do a hill walk called the 1000 steps. haven't for a few years but was saying to a friend recently I would love to do that again one day. Not giving up the dream! :-)

[n95johnny]

kerri,i think tysabri is 4 u, its the wonder drug, who knows "it" might even be a cure later down the track,all of our cyberfreinds has changd them dramatically,sory to hear of ur downa's,but if all else fails leave the best 2 last tysabri, i am convinced i was so anti-tysabri as u know me, not now hun, but i have no issues so i stik with Avonex,u have issues go tysabri,so far in all i know dramatic + effects. i will pray4u until the ducks come home. ur lookin hot little mamma..godspeed

xxxx

[kezzcass]

Thanks Johnny, Wow if you have such a strong conviction on it that says a lot given you are the king of research and harassment of Neurologists! haha Hope the ducks come to land soon :-) Kerri xo