Just a side issue....traveling for medical reasons is tax deductable in Canada. This includes mileage, meals, accomadation for you and a traveling companion if one is needed.
I don't know if this is the case in the US, but I'm just looking at the financial side of your delema.
Mike
OK, here's the scoop, the 'angel flight' is totally free, you need to give them one weeks time to get everything ready, There are a couple of licensed social workers on the front page, one is with the oncology unit at UCSF who says she will talk with anyone about the process. She will either help you or will find the social worker for the MS clinic. Here is the link if interested:
http://www.angelflightwest.org/index.php?/how_it_works/afw_flights/service_area/
It might be worth a shot
take a deep breath and try to relax, remember that it has always worked out in the past.
Red
This is really a difficult situation to figure out. You mention that you are about 200 miles from SF, is there any possibility of mass transit?
I thought of something you may be able to use--- it's called 'angel flight'. It's a group of pilots that transport people to wherever they need to go and it's absolutely free. You don't have to be bleeding or in a crisis either. I know a gal that was taken from Santa Rosa to Los Angeles to go into treatment for addiction. It doesn't matter what you have. I am going to go look them up.
There needs to be a person working all of this out for you too, like a social worker and/or advocat that can work out the doctor dilemna.
I'm with Lulu about talking to the UCSF people. I'm thinking that they should have a social worker there that can help sort this out. I would think that you would be followed by both neurologists but I would call and talk to the nurse just as you have here and let them know that you need help.
I am sending big hugs and prayers your way!
Red
It sounds like you really do have a somewhat tought decision to make - that is not a short distance to go, especially if you are not feeling well to begin with.
If it were me, I would talk to the UCSF folks and be honest about the dilemma you find yourself in. They probably will be willing to work with your local neuro for some of the basic issues to save you the regular trips to their place.
At least as them - the worst thing they can say is no!
take care, Lulu
I was looking at the tysabri website and it does say to call your doctor if you are having problems.Maybe if you talk to your neuro he can do a phone consult with the UCSF specialist so you don't have to make a trip up there. It's worth a shot, but that's where I would start.
Thank you both-
my husband thinks I need to stay with UCSF too . The money will come somehow, it always seems to work out :)
i think I am headed in the right direction and I will stay on the path. So the next question is, what do I call my local neuro for now. I am in a flare, but I can't take solumedrol without seeing the specialist, so should I call them just to say I think I am in a flair?
Mike- I have not asked the clinic, but they were very firm that my original visit was a "one time consult" and that they were not accepting new patients. I do not see the same specialist when I go for the TOUCH program. I see his colleauges (I looked that up Still it never hurts to ask. I will see what I can do.
thanks again
I think it is probably important to stay with the MS clinic while on tysabri. I know that it raises the risk of serious infections and that is why they freaked out on you about it. They have to monitor you very closely while on tysabri and might be able to manage problems easier at their MS clinic. I wouldn't want to deal with anyone who wasn't fully experienced with tysabri.
I also have to travel a long ways to my MS clinic and neurologist, 450 kms, or about 270 miles each way, but for me it's absolutely worth it.
If you are happy with the UCSF MS clinic and neuro you wouldn't want to risk loosing the ability to be seen by them.
Having said that, maybe you should phone the UCSF clinic and ask if it would be OK for your local neuro to take over the Touch program and your day to day health issues, and not loose your place with the MS clinic.
I can't see why they wouldn't accomadate you.
Good luck
Mike