Multiple Sclerosis: Waiting for remission

[2010ironside]

hi kez - tried LDN

[kezzcass]

@2010ironside No - just come off Tysabri and am seeing how I go for a while just trying to keep the veins flowing :)

[ThePennygirl]

I understand when you say ( I want a break) some remission! I wa dx July 08 and have really felt maybe 1 month of feeling normal, and have since gained more symtoms and walking has now become an issue along with the spasams its fustrating, I hope things improve soon keep up the positive and the good book! faith does heal :)

[angelusa73]

Dear Kerri,

sorry for the delay in watching your latest video. I was away for a little while and I just got back home. I don't take any medications except Tysabri and I don't know much about them because I refuse to take them! :)

I completely understand what you feel about the "remitting" part of your MS...It's about time to have a remission, right?!

I so wish you will have one very soon and that will last for years, not just months!

You so deserve a good break!!!

Take care,

hugs

Angela

[kezzcass]

Thanks for your kind thoughts/wishes Angela. I am hearing this a common response where people refuse to take other medications to treat symptoms. I am starting to understand why - the side effects of the meds are sometimes worse than the symptoms! Nevertheless right now I am taking the meds prescribed to see if it improves my symptoms and hopefully the side effects will wear off. I will give it some time =-). K ox

[irishbear76]

Kerri,

Klonopin should be helpful. It is a benzodiazapine so it works for seizures and it will do a helluva lot for the anxiety you are feeling.

My neuro can invoke clonus on me but having it happen spontaneously has got to be scary and ANNOYING.

You still have your wonderful smile and that is the best medicine you can have.

Thanks for the shout out. You are on my mind and in my prayers A LOT.

I want you to remit so bad. You need a break from this ongoing wrestling match.

I am here. Mark

[kezzcass]

Hi Mark, Well not sure nearly 2 weeks in whether the new drug is working yet...but I do feel extremely tired and apathetic is probably more the word (than anxious). Thanks heaps for your care and prayers. Kerrixo

[n95johnny]

hey Kerri, i feel for ya hun, hope things get better sooner rather than later 4u. why dont u change ur nuro,change to Avonex or Tysabri great drugs 2be on..ask ur nuro if either would suit u better. my prayers and thoughts r with ya. i had some of ur sympt'ms be4 avonex now all gone 4me.i think ur going wrong with ur nuro as i can see.

much luv n hugs

xx

[tdhtrey]

Yes I agree. I myself am on Avonex with no relapses. make sure they go through the basic three if that is necessary. "ABC" Avonex, Betaseron, Copaxone. I am still not sure about tysabri because it had a time when it was recalled from the market.

[kezzcass]

Hey Johnny, I am thinking - let's try changing drug before changing Neuro. I am pretty happy with him personally and I know he is doing all the tests to be thorough. Prob check out Avonex pref. I didn't think you were that into Ty??? Always appreciate your thoughts & prayers. Kerri xo

[dmplaura]

Ugh medical incompetence (losing tests). Sorry to hear you've been feeling not well. It's really nice to see you on camera again though!

Clonazepam! That's what I take. It does make you drowsy, but you'll get used to it. It's been wonderful for me, honestly.

My head pain never goes away Kerri, I don't feel like I'm ever in remission either.

I lost the taste/smell before as well.

Let's take a break!

I'm waiting to get Sativex filled (costly). I'll let you know the results!

[kezzcass]

Thanks - nice to be seen (lol). The drowsy thing is sending me crazy but am hopeful it will get better soon. A break would be lovely - somewhere tropical I am thinking....

[dmplaura]

I'm with you girl! Palm trees in the breeze swaying waiting for our arrival! :)

Oh yeah, found out the gov. won't cover Sativex. I can't afford it, so back to the pain doc for me. Maybe we'll be able to get Marinol covered (the pot pills, however you spell it).

It's almost inhumane that they take a freaking plant and whip it up into a legal, controlled dose, and put a price tag even a rock star couldn't afford on it :(

[51jessica51]

I know how you feel. I no longer have a complete remission. Luckily I only have a severe relapse once yearly with a few minor ones in between. Have just started Tysabri, feeling good considering.

I am praying for a remission for you darling girl.

All the best, jessica..

[kezzcass]

Thanks Jessica :-) Glad to hear you are feeling good. There are so many different experiences yet some similar stuff in between eh? You sound really postive - thanks for your prayers.