Today my husband had an appointment with his neurologist. This was not his normal appointment - his doctor's office called him and said that due to the cases of PML having been found more frequently he wants to see all his patients once a month before they get infused. Biogen-Idec is still recommending every 6 months with the neurologist so this is not coming down from the drug manufacturer or the FDA. It is his preference. So we went today to see him and discuss.
Seeing him once a month is a hardship for us, we don't live nearby, also with hubby not working it is a financial hardship to have to pay $25 copay once a month instead of 2x a year. We said as much, the doctor ignored and pushed on. Well if he has to go once a month he may as well have his infusion there too because then he could do it all at once. SURE the light dawns a little more - if the infusion is done there, they can bill it. $$$$ seem to be part of the rationale at least to me. I don't suggest this to the doctor.
Hubby has been having bad headaches since being diagnosed 12 years ago. Every neuro he has seen has said this is normal (including this one in prior visits) and has prescribed neurontin to help alleviate these. But today he told us that MS does NOT cause headaches and that he suggests my husband make an appointment for the headache center that they conveniently run in their office. Of course this can't be done at the same time as a Tysabri infusion because they alternate days using the same space AND it would incurr another $25 copay of course.
Hubby has had good luck with neurontin helping with the headaches and was asking the doctor to give it to him and he basically refused. (FINE - I'm sure his primary care physician would give it if we asked) Hubby was tight lipped but again said that coming out there to see the doctor 1X a month AND another visit for the headache center would be a hardship.
Here is what the doctor said and I am quoting - "It's your MS buddy! If you can convince it to stop being active because the drive is too much of an inconvenience more power to you."
My jaw dropped. Hubby's jaw clenched. We walked out, we made the appointment he required at the end of Feb for another follow up and left. I had to go back to work so I told hubby we would talk tonight. But he called me when he got home and I just went off on how sarcastic and rude the doctor was and how I figured that the only way I would consider staying is if the doctor realized he was an ass and called TODAY to apologize.
My carpooling friend's wife has MS too, she see's a different neurology group, she is also on Tysabri and gets her infusion where my husband does. Her doctor is not recommending monthly visits and so I am going to get the info for her doctor and schedule a consultation to consider changing.
His neurologist is a specialist, he's well known, he's published, no doubt the man knows his stuff. But today he was arrogant and overbearing and I find that uncalled for and unacceptable. I will find my husband a new doctor that can do all he can with a better attitude and then I will let him know why he's losing a patient.
When will people learn not to cross me? GRRRR
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7 comments:
That is just WRONG...I get so sick of these specialists thinking they are God and we are followers. I never cred for my husbands neurologist either. Good for you make sure he knows exactly why he won't be seeing you again.
Choose now while you can! Tin Gods can have a way of making your life extraordinarily difficult.
I only have one question. Where are we hiding the body? ;)
Just despicable, as I noted on the other forum. Neurontin is indeed a great drug, helps with lots of types of pain but not addictive, and yet also imparts a calming softness to life. :-) I took it for quite awhile years back with no issues stopping or side effects, and have had several friends who did too. One called it her "happy pills" because of the mood effects. You should have no trouble getting another dr. to prescribe at least, unlike, say narcotic pain relievers. When he gets them again, you should try one, totally safe. :-)
Oh I have taken the occasional neurontin when having a headache I can't shake. His are 300mg and they put me to sleep right away. I can't function on them at all! LOL
He still has some and I'm sure we will have no issue getting them again before we run out.
Wow, that was quite an appointment. Hey, who is (was) the doctor? I'm curious.
I also take neurontin and it helps with the pain which does sometimes feel like a crushing headache. I like my neurontin.
Oh my goodness. Yeah, I would totally get a new doc. It's sad when "doctors" don't care about the hardship that their opinions creates. Just like them we are entitled to our own opinions and have to do what it right for us as patients and patient advocates! You go girl!
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