tysabri & changing doctors

[karione]

My local neurologist referred me to an "expert' at a big city ms center. I felt fortunate to live where this is an option.  After an hour long exam by his assistant and him he said I probably have a mild case or ms and recommended a lumbar puncture which was positive for ms.  He and his assistant felt I had ppms and they said I could just be monitored by my local neurologist or continue going to the ms center in the city.

I went to the center for a follow up visit before making my decision.  The doctor asked if I had any new symptoms.  I told him about new tingling in my fingers and a funny feeling in my face.  He quickly said he would start me on Tysabri and told me about the drug and had blood work done for the JC virus.  I said I thought there was no treatment for ppms and he said I have new symptoms so that is not what I have.

My husband told me to talk to my local neurologist for a second opinion because this sounded like a serious step especially since the change in diagnosis was based on one simple statement from me about my fingers. My local doctored said that Tysabri is a serous drug and he is not an expert in ms but gave me a few other names to call for a second opinion.  

In the meantime my JC virus report came back negative and the person I spoke to from the ms center agreed that a second opinion was a good idea.

So I went to another expert who agreed with the first doctor that treatment was called for and recommended Tysabri or Copaxone or Gilenia.  I chose Tysabri because both doctors recommended it. I decided to stay with the second doctor because he was much more informative and helpful than the first although he works alone.  The first doctors was a bit brusque.

However , it has been almost 5 weeks since the paperwork for the Touch Program was started and i have heard nothing.  I e-mailed the doctor and he said he would call to see what the problem is and I have still heard nothing from him or the Touch program.

I don't know if I should start all over again with the ms center or try to light a fire under the new doctor.
I am frustrated angry and disgusted and my symptoms just keep getting worse. I'm not even sure if I am writing this for advice or just venting. Thanks.

[karione]

Thank you twopack.

I received an e-mail yesterday from Biogen-Idec yesterday.  I actually got the e-mail  by mistake but I called the 800 number and the woman who answered said they had just received my paperwork.  When she saw that it was signed on May 25th she rushed it through and I got a call later that day and the process is finally started.

I think both doctors recommended Tysabri because I am 56. The doctor initially said I had PPMs because I had no sudden symptoms and changed his mind when I did have a brand new symptom-I guess.

Thank you all for your input.

[Lulu54]

I'm a bit surprised at the neuro recommending a big gun like Tysabri when the first line drugs haven't been tried yet.  But I'm not the doctor.......

The second doctor was of no help to you because he offered three different types of drugs.    AS a new patient it is awfully hard to make an informed choice.

I hope the TOUCH folks contact you soon and get this underway.
best, Lulu

[Guitar_grrrl]

I've dealt with the TOUCH program, and I can say they're a little understaffed.  I'm not sure why, because Biogen-Idec is making billions off this med!

Keep needling them - they'll get their fecal material coagulated soon enough!

[kerrtelli]

Can I ask you why they think you have ppms and not RRMS?

[twopack]

Hi karione.  I'm bumping this up in hopes more people will see it.  I'm short on time at the moment but know a couple of members have started Tysabri recently and could help you out.  I'll stop back later too.

Mary