What would you do???

[Zacksmomi]

I can begin with a really long story but I can't type that much so hopefully you can get the scope of things  :)
So after my flair in May, I went to see my neuro in June.  He sent me to UCSF to a specialist for a one time consultation by phone request. There seems to be a pattern to my

I chose to have solumedrol for 5 days (my normal for an attack these days) and of course the specialist calls me that day with an appt 5 days later. They are 200 miles away, but we got to see great friends.  So the specialist saw me in pretty much top form, but due to my history, recommended Tysabri.

I had my first treatment and got a sinus infection that night.  It took 8 days for the infection to heal after I finally had antibiotics.  So I had an infection for about 14 days.   Today I am pretty sure I am in a flair, but the list of things I have going on is beyond typable.

It is just the same old sx's extra strong and I don't know if it really is a flair or not.  Like I said, the list of stuff going on is ridiculous for example, I had to postpone my treatment today an hour cuz my mother in law is in the hospital with an infection that has made her act like a 3 year old with NO energy.  

So I go to get my treatment and we are filling out the electronic questionairre and apparently change in sx's puts up a RED FLAG and says do not proceed without first calling DR.  No prob, he is 200 miles away, but is he really gonna say I can't have my Tysabri over a few whines about fatigue and numbness in the middle of summer?

well not only did they refuse approval for treatment, they want to see me Fri at 315.  OK so I am not supposed to stress out, but I am supposed to figure out on 46 hrs notice how to get 200 miles away from here for an appt while my mother in law is in the hospital.  Obviously I can't go Fri, but I am thinking when I call to cancel I will be asking several questions before I reschedule.

Am I crazy to drive 200 miles when I am broke when the Dr is just going to say "Yep you are in a flair!"  I don't know what to do now cuz I can't continue with my DMD's until I see this guy.  My appt was for Oct but apparently I have to go sooner.

UGH What to do???
D

So today I went down for my Tysabri treatment and they were filling out the form and one of the questions

[RedFlame]

I think calling everyone on your local team and getting them all on the same page.  Perhaps they can work this through since driving to SF is just not an option right now.

Sorry this is happening!!   Red

[Zacksmomi]

WOW!! I hit send before I re read that post cuz I was too tired, and what a mess.  Oh well, I knew you guys n gals would understand :)

My plan is to call the Tysabri consultant at the specialist's office.  She is who I talked with yesterday.  I am going to explain that NONE of the sx's I am having are new since I started Tysabri.  Now the sx's started again after my treatment and sinus infection, but they are ALL just worsening of old sx's, or return of sx's I had before.  

Maybe if they understand that the Tysabri did not cause these sx's they will let me go forward.  I was soooo excited to get treated yesterday cuz the Dr said after my second treatment I may start to find relief from sx's...some people do :)

So after I go to PT and let her rub out some of this spasticity so I can move again, I am gonna hop on the phone.  Wish me luck!!!

And thanks for the ideas.  Something has to be better than going up to san Fransisco right now...although the temp there is 30 degrees cooler....maybe there is something to this hehe!!

[lovemy6monkeys]

I like Steph's idea. 200 miles is not just a quick drive, and with the added complication of your mother-in-law, maybe your neuro can email/fax your records to the other doctor and he can talk to him directly without you needing to go all the way out there?

I'm sorry you are having to deal with this :-(
~Jess

[steph74]

Do you have a local neuro or dr that can consult with the one 200 miles away?  Can they do a web consultation?