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Posted 1/21/2009 12:36 PM (GMT 0)
confused  HI THERE.MY NAME IS MARY & I HAVE HAD MS FOR 19 YEARS.  I LOST MY JOB IN JULY 2006 DUE TO MY ILLNESS & AM NOT WHAT YOU WOULD CALL A "HOUSEWIFE".  I UNFORTUNATELY AM UNABLE TO DO THE CHORES REQUIRED BY A WIFE BUT IT WASNT MY CHOICE TO GET MS. I HAVE BEEN ON SO MANY DRUGS, I.E. INTERFERON, TO NAME BUT ONE THAT COMES TO MIND.  I STARTED NAVANTRONE IN 2006, MY LAST ONE BEING IN OCTOBER 2008.  MY NEUROLOGIST HAS DECIDED THAT I CAN NOT LONGER HAVE THIS TREATMENT.  SHE SAID THAT I MUST JUST WAIT FOR SIX MONTHS TO COME SEE HER & SHE WOULD TAKE IT FROM THERE.

SHE MENTIONED THAT I SHOULD LOOK UP "TYSABRI" ON THE INTERNET & PHONE HER TO TELL HER WHAT I THOUGHT about IT.    THE NAME WAS FAMILIAR SO I DID AS SHE SAID & GOOGLED.  THE VERY FIRST LINE THAT I READ PUT ME OFF OF READING IT ANY FURTHER.  I.E. INCREASES YOUR CHANCE OF GETTING A RARE BRAIN INFECTION THAT USUALLY CAUSED DEATH OR SEVERE DISABILITY.

 

I DON'T UNDERSTAND HOW A NEUROLOGIST CAN EVEN SUGGEST A TREATMENT LIKE THIS TO A PATIENT.  TO MAKE MATTERS WORSE, I HAVE GOT A VERY WEAK IMMUNE SYSTEM & THAT ON ITS OWN SHOULD HAVE TOLD HER THAT I AM NOT A CANDICATE FOR THIS TREATMENT. ENOUGH OF THAT.

I HAVE HEARD & READ A LOT about LDN & AM WONDERING HOW I COULD OBTAIN IT.  SOMEONE TOLD ME THAT SHE TAKES THE LIQUID FORM BUT I HAVE ONLY READ about IT IN A TABLE FORM.  WHAT COULD YOU TELL ME about THIS?

BY THE WAY, I HAVE RELAPSING, REMITTING MS.  GOD BLESS

MARY

 

Posted 1/21/2009 2:51 PM (GMT 0)
Hey Mary

Welcome to the board. I"m so sorry to hear of u'r dx and troubles. U certainly seem to have had u'r share of worries with this. I'm not sure why u'r immune system is so weak with this tho. With ms it should be over active rather than weak. Have u discussed this with u'r doc? We have some members here who've used Tysabri with success. In the beginnings, Tysabri was a bit unsuccussful and was eventually pulled from the market, but later was reintroduced and presented as safe and has since then been used by our members and many other with ms safely. I suspect it's since this reintroduction that u'r doc may have suggested that u look into this med for ur'self. Most likely our members will be along soon to post to u on their experiences. Please make u'rself at home and feel free to ask any questions u may have or post any comments u feel helpful. We're so glad u'r here and hope u'll find the answers and support u'r looking for.
Posted 1/21/2009 4:27 PM (GMT 0)
Mary,
Welcome to the board!
I was on Tysabri until last September when my Neuro took me off of it because of the report that came out of Europe of 2 new people that had been found with PML. For me, it didn't seem to be doing anything anyway. It is mainly for people that have Relapsing Remitting and my Neuro diagnosed me with Primary Progressive MS in May of 2007 after first dx'ing me with RRMS in June of 2006. However, when talking to others that were on the Tysabri, they were very happy with it and it seemed to be doing them some good. I guess it would be a personal choice.

I am waiting to start a treatment of Cytoxin as soon as my Neurologist that I saw in Chicago emails his protocol to my Neuro here in Idaho Falls. I guess I am not really sure what LDN is so I can't really be of any help to you in that respect.

Hopefully you will find a home here on the board. There are a lot of good people helping everyone and the Forum Moderators here are really great! We all understand wht you are going through!

Good luck and God Bless You!
Posted 1/22/2009 1:10 AM (GMT 0)
Hey Mary,

Welcome to the board.  The reason doctors recommend tysabri is it is the most effective drug on the market for slowing down the progression of MS.  While other mainstream drugs (rebif, copaxone, betaseron, avonex) all have an average efficacy of 40 %.  Tysabri has an efficacy of 67 %.  While PMLs are a frightening side effect, most of the PMLs have been associated with combined therapy.  Since its re-release in the US there have been no real problems.  It is very very tightly regulated in the US. 

If and when copaxone stops working for me, I am asking for Tysabri. 

I agree with Rhonda, it is very odd that you have a weak immune system.  The whole problem with MS is that we have over-active immune systems and that it is just making stuff up to attack.........namely the myelin in our brains.

Good luck with LDN.  Let us know how you do on that.

Posted 1/24/2009 4:25 AM (GMT 0)
Hi Mary,

Gosh, I really feel for you. All of the waiting and investigating new meds while you are exhausted is dreadful. Just know that it will get better.

Regarding Tysabri, I had the treatment just once before it was pulled off the market, and I felt great that month. If my symptoms were still very severe, I would absolutely do it again. I am on Copaxone sort of hit & miss, but tonight is my first night for LDN. I'll update on how it goes.

Saying a prayer for you tonight!
Posted 1/24/2009 5:23 AM (GMT 0)
smhair  HI ALL, THANK YOU SO MUCH FOR YOUR REPLIES  JUST AS THE PICTURE  AT THE BEGINNING OF THIS E-MAIL, I JUST WANT TO PULL MY HAIR OUT.  I AM NOW STARTING TO ? WHAT I SHOULD DO.  THINK THAT SHOULD MAYBE STILL TRY OUT LDN & IF THAT DOES NOT HELP WILL RECONSIDER TYSABRI (COLD SHIVERS). LIFE IS DIFFICULT ENOUGH STILL TO HAVE TO MAKE SUCH HUGE DECISIONS.  PLEASE KEEP THE OPINIONS & PRAYERS COMING.  GOD BLESS

MARY

Posted 1/25/2009 7:07 PM (GMT 0)
Mary,
My neuro took me off Tysabri because he didn't believe I should be on it but I don't really believe it was given much of a chance to work for me. It is a personal choice but everyone that I talked to that was getting Tysabri were really happy with it. Just make sure that if you do decide to go on Tysabri, your body has washed out of all other treatments before you take your first treatment of Tysabri. Good luck to you in anything you deside to do and please keep us informed of what you decide for your treatment. God bless. I also wanted to ask you, did you lose your job because you had MS? If so, your boss ought to be told about the Americans with Disability Act because that is against the law. We are protected by that law!
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