So after all that mess (see here) I think we have been wooo'd back to the doctor that pissed me off so much a month ago. We sent in the form requesting his records be transferred to the new neurologist and called to cancel his appointment this Thursday and that set off a string of calls.
The office manager (that we LOVE) called Pete and said - "what is going on?" and he filled her in to the best of his knowledge, which with his memory isn't all that great. But she said she was going to talk to the Dr. and rattle his chain a little. Pete told her that he liked the doctor and wouldn't mind working things out so he didn't have to change. So I figured I better call her and give her the true picture of what is happened. And I did give her every last detail that all culminated with us being royally pissed off.
She said she talked to the doctor and asked him if he was "gruff" with Pete and the doctor said he was because he was frustrated that we didn't want to do as he was requesting. So I gave her my side of the story:
We were okay with the idea monthly visits at first UNTIL he wouldn't give him the drug that works great for his headaches and instead was insisting Pete go to their headache clinic and actually told Pete that "MS doesn't cause headaches" which frankly is just a crock of you know what. Then the doctor gets snotty with us to boot.
She understood our frustration, she said she'd get the files ready if we really wanted to go and that she would miss us. She also said if financial hardship was part of the problem that the doctor would waive co-pays. I was surprised at that and pleased. She also told me that Biogen is now starting to STRONGLY recommend that all patients be seen monthly before their infusion and soon will be requiring it.
So - Pete is going to keep his appointment on Thursday. I can't go with him although I really wish I could but the Office Manager (that we LOVE) said she'd go in and play mediator if needed between the two of them and get to the bottom of all this. I trust her, she will call me after and tell me how it went. If Pete feels comfortable with it he will change his Tysabri infusion site to the doctors office and see the doctor before his infusions every 4 weeks. And there will be no co-pay required for these visits. Still a 70 mile commute versus a 25 mile one but some trade-offs I am willing to make.
As for the recommendation that Pete go to their "Headache Center" he's not going to do it. If the doctor won't give him the Neurontin that has been working so well for him for the past 6 years he will get it from his PCP who usually has no issue prescribing things for him.
So we may be sticking it out with this doctor. I hope on Thursday he at least apologizes for being so "gruff". I told Pete I wouldn't cancel his other appointment with the new doctor until after Thursday so he could be sure what he wants to do. I really wish I could go with him but I have a meeting and just can't take the time AGAIN on such short notice. Maybe it's better - he will decide on his own and I won't be able to influence him one way or the other?
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7 comments:
I'm glad that they're trying to work things out, and yes, I think there is some benefit to you not going. These two men have got to figure things out and be able to problem solve and be honest with each other. Hopefully the OM will keep the MD in line and hubby will be receptive to what ever olive branches they offer...
I'd pay to be a fly on the wall!
I still have not heard of other Tysabri patients needing to have monthly neuro appointments, but then again I haven't been looking for that information.
I'm a bit surprised to hear that the neurologist didn't want to prescribe Neurontin. I've taken Neurotin since developing shingles before the official MS dx and have been using it ever since for nerve pain.
One of my lovely nerve pains resembles the feeling of an elephant standing on my head. Certainly a unique type of headache which thankfully the Neurontin takes care of.
I hope that the appointment goes well. Nice that the office manager will be there to mediate if needed. Will be looking for an update.
Well at least they are making the effort to turn things around. I hope it works out the way you want.
No co-pays, that is nice of him. I'd bet that "guy to guy" nothing will even be spoken of it. In my experience, they just move on like nothing ever happened. He'll be seen monthly with no co-pay, you'll get the neurontin from your PCP and that will be it. At least in my world with my non-confrontational husband.
I wish you both the best and hope it works out for everyone!
I'm in a "I hate the medical profession" mood these days...then, I remember I WORK in the medical profession, which only creates self-loathing. LOL
UPDATE - the doctor apologized over and over. AND he wrote him the prescription for Neurontin. Pete will get his next infusion Monday as planned but next month it will be at the doctor's office. Now to cancel the appt with the new doctor.
Good that the doctor apologised, hope the relationship with the doctor improves.
You need to be able to talk freely to him/her so its very important.
Take care of each other.
Love,
Herrad
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