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Question about my Dr situation

I have run unto a bit of a confusing situation and I am not sure what to do.  My local MS neuro (local being only 45 miles away) managed to get me a "one time consultation" with an MS specialist at UCSF (200mi away).  He made a personal call to him and descrbed my case and the Dr agreed to see me (is that good or bad?!?)

I understood that this was a one time visit and that my local neuro would be the one to continue my care.  

So the UCSF trip was great and the specialist and I had a big talk about Tysabri and agreed it is the best treatment for me short term until the MS oral treatment comes out.  We talked about the Touch program you have to be involved in with Tysabri and that I would have to come back at 3mo, and then every 6 mo.  I thought "great, our friends have a nice house 1 mi from the hospital this will be wonderful" plus I would be able to be seen by the specialists again.

Treatment one went well, but I developed a sinus infection that night. I had just gotten back from a funeral I drove myself to 7 hours away.  It was a tragic situation, I drove through LA, and I always have to expect to be run down. So was the sinus infection a coincidence???  

The sinus infection took longer than normal to clear up an. I got antibiotics about 5 days after the infection started, and it took 8 days for them to do their job.  Usually antibiotics clear me up in 2-3 days. I started having flare sx's just as the sinus infection was ending.
  This includes merely worsening of old sx's I don't really have any "new sx's" persay, but it seems flare like.  Well I would expect after the funeral and sinus infection, a flare is obvious.  

When I went to get my second infusion of Tysabri, my mother in law had fallen ill the night before.  (some have read about that) I went to the hospital to reglate a bit on her lack of care and then went for my infusion.  The infusion center has to fill out a questionairre and it asks if I have any new sx's. Well what do you mean new???  So basically the nurse decided that a worsening of old sx's that were not there last time I had Tysabri means YES.

Well YES puts up a red flag to call prescribing neuro. He says I MUST be seen before I am infused.  So now, before I can get my Tysabri, I have to go see the specialist at the MS clinic 200 mi away.  Apparently since  I enrolled there, they are now  my treating facility.  I think I can get my local neuro to take over the Touch program for me if I request him to do so, but I am afraid I will lose my ability to be seen regularly at the MS clinic.  

I am very torn.  I like my neuro just fine, and have no problem asking him to precsribe the Tysabri, plus I can't afford to go to UCSF every time I have a new sx which seems like about every 6 weeks.  But I am also really happy with the clinic at UCSF and don't want to lose my place in their program.  I am interested what others think about how important it is to stay involved with the MS clinic?

Thanks
D
8 Responses
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1140169 tn?1370185076
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
Helpful - 0
1312898 tn?1314568133
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
Helpful - 0
1312898 tn?1314568133
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
Helpful - 0
572651 tn?1530999357
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
Helpful - 0
400099 tn?1282954864
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.
Helpful - 0
Avatar universal
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
Helpful - 0
400099 tn?1282954864
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.
Helpful - 0
1140169 tn?1370185076
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
Helpful - 0
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