Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, November 02, 2007

My Tysabri Diary...I just returned home a little while ago from my 14th Tysabri infusion.

Nothing new really to report about the infusion as they are becoming very routine. Ray (my caregiver) went out to get pizza and mudslides, yum!


I spoke to my infusion nurse about the other Tysabri patient being seen there, and asked how she was doing. She said, "not too well." I asked, "did she have side effects or an adverse infusion reaction?" My nurse said, "No Lauren, she is not doing well with her MS." It turns out, she's in her young 20s, has been in a wheelchair for a couple of years, and has Progressive Relapsing MS with only three infusions so far, and losing hope.

I asked the nurse to tell her the next time she saw her for her Tysabri infusion, "sometimes it could take 4 to 6 Tysabri infusions for the medication to really get a handle on her MS, and if she hasn't had any relapses in those three months, Tysabri is keeping a majority of those nasty inflammation cells from wreaking havoc with her MS. As it is now, Tysabri is also (apparantly) keeping her rapid progression to a slow progression. And because she's still young, she has a good chance that her damage is not permanent and might eventually see improvements in her condition. And I stress this most of all, please, please tell her, never ever give up hope. She is on the best medication available to us to fight our MS!" My infusion nurse lit up like a light bulb and said, "oh I didn't know all of that, I'll be sure and tell the young lady everything you told me!"

As an aside, I was contacted by a gentleman recently (3 nights ago I believe) who informed me that he has just been diagnosed with MS. He gave me permission to post his e-mails that he sent to me, in the hopes that it might help another MS patient viewing my site. I am going to remove his name to keep his identity safe.

Subj: Hi Lauren
Date: 10/30/2007 5:24:20 PM Pacific Daylight Time
From:
To: LGLBGL2003

Hi Lauren,
I just turned 45 today and was told I may have MS. What a bomb on me. I wanted to throw up and was weak in my knees when I stood. One week ago actually Wednesday I woke with kinda funny vision. I thought it must be a migraine. Well I left work because I couldn't see to do my job and I thought maybe a silent migraine. Next day no better, I went to Ophthalmologist, eyes ok. Wrote me a prescription for prism glasses which I didn't fill. Next day no better, I went to Neuro with some work and had blood drawn and emergency MRI no contrast at 3pm. Dr called me 530pm and said not to worry no aneurysm just some inflammation. Well, I go to my appointment today, Tuesday after Friday and he tells me it may be some concern of the plaque build ups on my brain and it may be MS. I haven't had any other symptoms except dizzy spells last year I attributed to my Pro lapse Mitral Valve. No numbness of extremities only double vision. I was told it can hide in optic nerve. What a day I have had. I have been in Elan for over a year now. What a way for my investment to grow. I told the doc I was bumming because I heard the MS treatments are terrible except for Tysabri but it was hard to get on.He said Ty is only for the big guns. I am thinking must I fail and progress in my disease before I get Ty? If only one more year or so before I came down with this. Granted its not positive but I think it must be. I have another MRI tomorrow with contrast to determine the timeline of my plaque. I have spinal tap Thursday for the ultimate diagnosis of MS. I am dreading this. It will be done with fluoroscopy to use the smallest needle. I am concerned that it will take up to 10 days for the diagnosis. I am worried my vision can worsen and maybe I wont have a good recovery in my vision by waiting so long. Do you know about recovery of vision? Could it be Myasthenia Gravis? Spelling is bad. Your write ups on IV are so professional. I could only wish to write like you. I read your letter to the WSJ guy. You really did wonderful. I wrote him too and had a response that was so general. I saved all the sites you sent him on favorites.
Can you help me find a progressive neuro that would write for Tysabri? Isn't that the best to do? I guess my insurance would cover it. Can you direct me to sites that will help me find info that I need to make best decisions and weed thru this? I am scared of being on a bad drug that would just make me worse in complications.
Please tell me what you think and would do!
Thanks Lauren!
Cant believe its come to this! Life is precious!
Regards, xxx
Subj: Re: Hi Lauren
Date: 10/31/2007 4:24:20 AM Pacific Daylight Time
From:
To: LGLBGL2003
Right-click picture(s) to display picture options

In a message dated 10/30/2007 9:20:46 P.M. Eastern Standard Time, LGLBGL2003 writes:
Hi xxxx! It's so nice to meet you, albeit under sad circumstances...first I can tell you, don't panic. The follow-up contrast MRI and spinal tap you are going to be having soon are precursory for most neurologists to provide a final diagnosis of MS. Believe it or not, you could not have been diagnosed with MS at a better time because the diagnostic testing and medications for MS have improved so much over the last five years, you are lucky!

You are such a trooper...and smart too in wanting to use only Tysabri. If you can convince your neurologist that you are "needle phobic", and won't comply with the regime of the ABCRs, he just might qualify you for Tysabri in that the FDA states "Tysabri is generally recommended for patients who have had an inadequate response to, or are unable to tolerate (needle phobic), alternative multiple sclerosis therapies."

You will probably want to start some sort of treatment right away to calm down the inflammation causing your optic neuritis, and the best way to do that is treat that with steroids (either prednisone or IVSM- Solu-Medrol). Double check with your neurologist.

If you need to find a Touch Certified neurologist in your area, I would suggest that you contact Melanie Stephenson at MSActiveSource (she's the Supervisor of Patient Support Services that I've been dealing with). Her direct line is 1-800-456-2255 extension xxxxx. If you would like, you can mention that I referred you to her. She is out of xxx too... how great is that?

Remember xxx, having MS is not the end of the world...you have become your own patient advocate and can help shape the worlds of other MS patients out there that have been lost for years, searching for information that can help them. Think of your life with MS as an opportunity to help others, while helping yourself - you've got a leg up on them!

Please, please, please keep me posted on your progress, and if you need me, I'll be here-don't ever hesitate to contact me.

Hang in there dude, it's going to be all right :)


Lauren
A very
proud member of:
www.MSPatientsForChoice.org

Lauren,
Thank You so much for that informative letter. I wonder why he hasn't started steroids yet. Is he waiting for results of spinal tap? I would like them now do to my fear of losing more vision. I dont know why he hasnt given me any.
I will call Melanie today. I hope there is one local who is progressive and knows best. ABCR's are the drugs Avonex, Copoxone and Rebif to name most? All those drugs seem bad from what I have read. More side effects than Ty ever will have.I just dont get it.
Thanks again and I will keep you informed. Have to run to MRI....YUCK!!
Your Friend, xxx
From: xxx
To: msladyinca
Move To
Date: 11/1/2007 9:05:40 PM
Subject: RE: how did your MRI go yesterday?

Lauren,
You are so sweet. Thank You for thinking of me. The MRI went ok just took awhile to get in but once in it was 10 minutes. The contrast was no problem. No results yet.
I had the spinal tap today at 9pm. It went ok too under flouroscopy. She needed to put more under my stomach to get the spinal colume apart enough for the needle to go through. I have been laying down all day in bed. I am getting on couch now and sitting at pc a little. Its getting a little sore now though. No headache!!!
The best news is that Andy called from Biogen Idec for Touch prescribing. Man is he awesome. Answered all my concerns that I had. He told me of local doctors in town who prescibe Ty and the same people have a Ty treament center there. I was so happy. Plus I found out my insurance would cover Ty and that it cost in the same range as the others. I am happy to find this out, good neuros who don't make you fail and go blind in one eye prior to Ty. I have much new confidence now.
So I guess the Spinal tap takes 7 to 10 days..Plus they drew more blood work for PgE levels I believe.
Thanks for your help with hooking me up with the Biogen people. They mentioned your name on the phone along with Melanie's. Its so nice to have people who are willing to help in time of need. You are such an angel for me.
Thanks so much!!! Will stay in touch!!! xxx
---------------------------------------
To: xxx

Date: 11/1/2007 10:03:55 PM
Subject: RE: how did your MRI go yesterday?
Oh xxx, I am so glad that you had no problems today.... oh man, no headache from your spinal tap? I am sooo jealous! When I had mine (two actually) in 1975, I had a migraine for week and a half... looking back, I can laugh now, but sure as heck wasn't funny then!

You said "They mentioned your name on the phone along with Melanie's. " Did you call Melanie's extension first? How did the people of Biogen know about me? Hmmm, That's too weird, maybe I have a reputation over there now-? (don't mess with that lady Lauren) LOL.

I'm just so happy that you had a good experience with MSActiveSource, plus your insurance will pick up Tysabri if you go on it, no headache from the spinal tap, and no allergic reaction to the contrast dye (gadolinium). Heck, I'd say you had a pretty good day all the way around!

Lauren :)

You all know how I feel about being your own patient advocate, and the above is a classic example of how we each need to be proactive when it comes to our health care.

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

2 Comments:

  • At 8:29 PM, Blogger Cyndee said…

    Hi Lauren and Mr. xxx
    When I was diagnosed in 2004, I was sitting in front of a slot machine in Las Vegas when the doctor's office called me and told me, in a very somber voice, "I'm sorry to tell you that you have MS". I tried to reasure her that nothing will get me down, don't worry, thanks. I knew someone that had MS and she made me an appointment with a MS specialist. I Thank God that she did that everyday! You have to find the right doctor, and mine is very aggressive. Mr. xxx you have found the right person with Lauren to help you out. I have just had my 10th Tysabri infusion and I have not had an exaserbation since starting the drug. No side effects either. I stopped taking the Tysabri for a month and all of a sudden some of my MS symtoms re-appeared, and I was in shock, because I had forgotten about them.
    Keep your chin up and learn to Fight for what you think is the right treatment for you.

     
  • At 4:44 PM, Blogger Lauren said…

    Oh how wonderful Cyndee! I wish Dr. xxx were out here and was a member of Kaiser (ha ha) because I absolutely loved him, I'm so jealous of you girlfriend ;)

    Have a wonderful Thanksgiving...,

    Gobble, gobble...heehee

    Lauren :)

     

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