Appointment with ms specialists

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mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 4/19/2008 12:36 PM (GMT -6)   
I thought I would try to be more coherent today in describing my appointment with the specialists at Barnes Hospital in St. Louis.   After the neurological exam and looking at my MRI's and LP, they confirmed I have MS.  I did not know that the issues was debatable.  eyes The neuros did say that they thought my ms was mild at this point (despite how I may feel) based on the number of lesions, the fact that I have only had one major flare, and the neurological exam.  They also seemed to be suggesting that they thought that tysabri had been too aggressive of a therapy for my condition.
 
They stated that they would not recommend I try an interferon or copaxone again based on my previous reactions.  They stated that this could result in an anaphylaxis reaction which I would really like to avoid after the tysabri reactions. nono
 
So their recommendations seemed to be that I should:
 
  1. treat the symptoms -- They gave me some samples of provigil to try.  I am going to call my neurologist's office tomoorow to discuss this with him before I try it.
  2. they said that I could try one of the drugs that is currently being used to treat transplant recipients ( they also suppress the immune system) One that was mentioned is Cellcept. It is currently being tested in trials.  I do not remember the name of the other as I had never heard of if (sorry, Gretchen).  But it has been around longer, is also used in transplant patients, and is being used more widely in Europe. It is also cheaper than Cellcept.  She said that my neuro should be able to prescribe one ot these. They are oral drugs
  3. Finally, they stated I could try to get in a trial.  There are currently 3 different ones being conducted in St. Louis at another ms center.  The are all oral drugs.  (I am not too crazy about this option for several reasons.  Driving to St. Louis (145 miles each way) on a regular basis would not be fun.  And I am not sure I am brave enough.  I do not really want to be on a placebo for 2 to 3 years.  Plus, I do not have the greatest history with meds.

It was interesting going to a medical practice that specializes in ms.  If I had different insurance I would consider going there on a regular basis. (I would consider changing insurance plans this summer, but the state plan is far more expensive than my HMO.)  While they seemed to have a more conservative approach than my neuro, I felt pretty comfortable there.  And it was great to talk to 2 doctors that specialize in ms.

Finally, they stated that they believed that there would be an oral med for ms in 2 to 3 years (perhaps sooner) so they felt that I just need something to hold me over until then. They also thought that rituxan (infusion) would probably be the next treatment approved by the FDA, but agreed that with my history I may want to avoid it for now.

Sorry for the long post.  Hope everyone is having a good weekend!


Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/19/2008 1:17 PM (GMT -6)   
Hey Barb!

WOW!!! Sounds like a really productive visit!! How are u feeling about all this?? I'm glad to see they want to be really careful with the meds. U DO have a bad history with meds and ultra care is going to be needed. I think u'll really like the provigil. For most people it seems to pretty much be a miracle drug...but then again..u be careful! I feel like u on the study thing..i wouldn't want to do that esp in u'r case. That's too risky to me. I'm really anxious to know more about the meds they are suggesting! I do hope that works out nicely and isn't too pricey too. It's so good to have good insurance!!

Take really good care friend! Thanks for this update. I was wondering how it'd gone! No worries on the long post...it seems even our mods do that from time to time. ;)
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 4/19/2008 5:42 PM (GMT -6)   
I just wanted to add that I have done some research today, and the drug they suggested may be imuran. But I am not sure.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/19/2008 7:23 PM (GMT -6)   
Hi Barb,
I am so glad you had a good visit at the ms clinic. You sound like you were pleased w/ the doc's. I am so happy for you. I think you needed this visit w/ a more conservative approach. I would be hesitant too with the whole trial thing. Good luck Barb, i hope everything works out for the best for you. We all love ya Girlfriend! Be sure to keep us updated!\
Love
Lynn
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta

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