Dr predicament...what on earth to do

[Zacksmomi]

I have a lot of thinking to do tonight and I always take what everyone here has to say into consideration when I it comes to dealing with this MSery.

To keep it short, My primary care neuro is 45 mi away, that's the closest I can get and that is fine.  He is my second neuro as the first I ran from screaming cuz his bedside manner was a joke.  I really liked this neuro and  he was doing everything he could think of for me for a year. From May 09 to June 10.

He decided to send me to UCSF to enter the TOUCH program and take Tysabri.  UCSF is 250 mi away and not exactly a place I want my primary care neuro to be.  I had a 6 month follow up with my primary neuro that sent me to UCSF and he is acting like he is no longer caring to see me as I am being taken care of up at UCSF.

I am in a flare and with Tysabri you have to go through a big process before they decide if you should have steroids or continue Tysabri. They also want to look for PML (I am considering stopping cuz of that)  UCSF wants me to come up there for an urgent visit and get checked out and have an MRI. They just scanned my brain up there on Jan 5th and there were no changes.
The UCSF nurse told me that they would be more than happy to speak with my neuro 45 mi away and work with him about which medicine I need.

I feel like my regular neuro doesn't want to deal with me anymore and I have been told he doesn't like to deal with the TOUCH program.  So do I call him anyway and request that he speak with UCSF about his opinion of what he saw when I was in is office Jan 26?  I am a bit put out with him after the last visit.

The other option is to find a new neuro and see if they are willing to work with UCSF but then I start from scratch again.  I know this is all too much to think about, but I am frustrated with both neuros I am dealing with and I do not really feel like going 250mi one way to have them tell me I am in a flare.  

Would you go back to the neuro that has been helping you for a while then became less helpful, or would you start over with a new neuro who is more cooperative (if I can find one haha!!!) or would you just suck it up and go the 250 mi to see the specialist at UCSF???

Sorry I have been asking for tons of help lately but this is the best place I have found to turn to
Thanks (Again)
D

[wiggles94]

Hi and so sorry for all you are going through now .  I can relate to your problem a little bit  as I went to a 2nd opinion neuro - and was going to switch - he was only 1 1/2 hr drive - I didn't want to deal with that and I want to keep things as simple as possible - so I'm staying with my neuro at home .

But I think Lulu had a good point - before you write off the neuro you like - is it worth a conversation with him stating your feelings about all this?  I know who you work with can be so important during difficult times.  I'd hate to have you write him off and not be able to find someone nearby that you like.  Sounds like you had already built a relationship with him.  AT least if you tell him your thoughts, you have given him a chance to help you out, and then you can feel more comfortable moving forward.  Even if you stayed with the UCSF program, I understand you want someone close by to work with.  Rather than you driving all that way - couldn't your neuro do the testing and report the results to UCSF?

I'm confused as to why he referred you to that program if he doesn't like to work with them? It just sounds like you need some clarification from him re what you want, and what he is willing to do for you.

Whatever you decide, best of luck to you and  I hope you are feeling better soon!
Carol

[daisy.girl]

and 172 infusion sites in CA........

[Lulu54]

I just did a very quick check and there are 446 doctors in CA registered for TOUCH - I hope one of them is closer to you.

[Lulu54]

You say you did ok with this neuro until the last visit?  Could we give him the benefit of doubt that perhaps he was having an off/bad day and try him one more time?  

I like daisygirl's suggestion to check the TOUCH list for who else is around that could handle your care.  You never know who might be qualified........

good luck - this is a tough one to call.
Lulu

[daisy.girl]

I think I would look for a new neuro closer to your home. I am sure now that you are diagnosed, that finding a neuro to follow you would be easier. I would not want to go back to a doctor that I felt had already blown me off.

So, are you driving 4 hours each way once a month for your Tysabri? I am sure you can find a infusion site closer to your home. Just go on the Tysabri website and it will show you a list of sites and also, neuros that are already a part of the TOUCH program.

Here is the link, you can put in your zip code and it will give you a list of doctors and if you look at the links to the left, you will see one for infusion sites too.

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/treatment-with-tysabri/locate-tysabri-prescriber.xml

I hope this helps!

[MomofTwo83]

Sorry to hear of your problems and flair.  I am not officially diagnosed (although my primary diagnosed me...just waiting for the neuros opinions) nor have I started any DMD's or anything to help with the symptoms.  So what I suggest is only an opinion...

I would talk to your neurologist about what you are going through and that you are in a flair and need help now.  You can't drive 250 miles while you are in a flair...it just isn't safe nor fair for you.  After all he is still technically your neurologist.  If he isn't willing to help you at all, then I would find another neurologist and explain your situation.

I'm not sure what the TOUCH program is or the drug you are taking, but would it be possible for you to go into the ER or urgent care and tell them what is going on and speak to the neurologist on call?

I'm sorry if non of this helps...I hope things get easier and better for you!!

Victoria