Missing Tysabri

[michelleric]

and still missing my voice...

My voice is still bad, and it seems to be associated with how I am feeling. At the moment I am having lots of MS troubles, although I have been pushing myself too much the past few days.  We had out of town guest, and a holiday which we hosted. The family all helped, but the stress was high, and my body is low.

It seems my voice tends to be worse, when I am doing worse.  I could hardly get off the couch today, and I have very minimal voice.  I go back to the ENT at the end of the month, but am wondering if this whole vocal cord issue, set of some new MS symptom.  I don't know.

I do know now the Tysabri was definitely helping me. I have really backslided since I stopped.  I see neuro soon to figure out next step.  I am going to ask if doing Tysabri every other month might be ok.  Anyone know this?

Thanks,
Michelle

[Cosmobirdy]

Hi Michelle,

I'm so sorry to hear that you are still feeling so bad.  I am hoping that your voice will start to get back to normal soon.

As far as spacing out the Tysabri infusions, I know there are people who do that.  I have read of people going every 5 weeks, every 6 weeks, every other month, and even every 3 months.  It seems to depend on the patient situation and the neurologist's thoughts and preferences.  You may be able to find out more by trying to Google it.  I have just read incidental personal experiences on various other forums over the past year or so.  I have a Google Alert for "Tysabri", and that's how I have come across these things.

Take care and get as much rest as you can.  Thinking of you and sending good thoughts your way.  Let me know if there's anything I can do to help, and definitely keep me posted on what your neuro thinks about spacing Tysabri infusions out farther apart.

Bye for now,
Rita

[rendean]

Michele,
So sorry you backslid from last week's festivities. I knew dinner would be at your house, as always :-)

I will say that if I get too tired or get ill, my voice gets hoarse and stays that way until I am fully rested and well. I don't know if that is common or not.

I do wish you the best and hope your voice will soon return to normal!

Hugs!!
B

[Lulu54]

Michelle, I was so hoping that you were on the upswing with this problem.  It sounds like you are figuring what it is that makes you step backward in your health.  MAybe you should call the ENT and ask if you should be seen sooner - the end of the month is quite a ways off.

hugs, L

[Sumanadevii]

Here is a website saying it is possible that your vocal cord issue could be from MS.  Have you talked with your neuro about it?

http://www.mayoclinic.com/health/vocal-cord-paralysis/DS00670/DSECTION=causes