Referral to MS center

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mystery reader
Regular Member

Date Joined Jun 2007
Total Posts : 257
   Posted 4/3/2008 1:37 PM (GMT -6)   
Well I saw my neurologist this morning and he admitted he did not know what to do.  He emphasized he does not want me to just go off all treatments, but does not like the idea of the chemo drugs.  He has a MS patient that has been on them that has gone into heart failure. Although he did mention the possibility of rituxan and said he would have to fight the insurance company for it as it is still sonsidered experiemental.  So he is going to refer me to a MS center/specialist at Barnes Hopspital in St. Louis.  
Overall I am pleased that he is making the referral.  I am not sure if I am willing to try any of these other drug therapies at this point.  I am just going to try to not worry about it for now and wait until I have my appointment.  It will probably take several weeks to get in.  
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 4/3/2008 5:40 PM (GMT -6)   
Hi Barb,
I thought about you all day today. I am so glad your neuro referred you to the ms center. This is a great next move. I am sure you are so frustrated right now, but hang in there. I hope you get in soon. The chemo drugs are scary b/c of the risk, i hear ya. Just try to relax until your appt. You'll be fine. They will get you on the right track. Have faith Barb.
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta

Regular Member

Date Joined Feb 2008
Total Posts : 69
   Posted 4/3/2008 7:15 PM (GMT -6)   
Gosh Barb, I'm sorry to hear all this. Please know my thoughts are with you.Deb
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 4/3/2008 7:17 PM (GMT -6)   
Hey Barb!!

Wow...this is good news! I'm so glad u'r being referred! It does sound like u'r doc is being really careful to look at all the meds avail and get u the best of all worlds. I"m so happy to see this! Hang in there friend...May will be here before u know it. Take good care and call on me anytime u want.
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*

Regular Member

Date Joined Aug 2007
Total Posts : 144
   Posted 4/3/2008 7:21 PM (GMT -6)   
Barb I too am thinking about you and I hope everything goes well for you....Nothing ever comes easy but it sounds like you are on the right path...Good Luck!!!barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 4/3/2008 8:47 PM (GMT -6)   
I am so glad to hear that you are going to the MS center.  This sounds like a hopeful plan.  I hope they can get you started on something that helps.  I am excited for you!  Please keep us posted as to what they say.
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006

Regular Member

Date Joined Apr 2007
Total Posts : 334
   Posted 4/3/2008 9:06 PM (GMT -6)   

Wishing you the very best Barb! I’m so glad you have this referral.

Motown John
Regular Member

Date Joined Jun 2005
Total Posts : 475
   Posted 4/5/2008 1:58 PM (GMT -6)   
Saturday p.m.
Good afternoon,  Barb:
Have you ever thought of checking with local MS Sociey office?
I'll bet that they can assist you.
Great  Luck.  John

Regular Member

Date Joined Mar 2007
Total Posts : 62
   Posted 4/6/2008 1:33 PM (GMT -6)   
I'm glad that you are being referred to a MS center.
My BIL was referred to the MS center in Dallas & received the Rituxin.
Good luck.
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