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What to do, what to say...

Wow. So I am really starting to dislike my neurologist.

I went to my appointment this morning, my appointment that was to be the first appointment of the day. You would think "The Good Doctor" would be on time for the first appointment of the day, right?

That sound you hear is me roaring with laughter. In fact, not only was he NOT on time, but I felt distinctly sorry for this other woman who'd come in at 9:30 for her 10 am appointment with my doctor (I overheard her tell the receptionist)... I have no idea what she was thinking when it was 10:15, I was leaving and The Good Doctor was calling in his 9:30 appointment. I didn't have the heart to tell her that his being 45 minutes behind was a "good" day...

Me? I arrived promptly at 9 am, knowing there was very little chance I'd even be called at that point. As it was, I was called in around 9:40 or so, and the appointment - while rather brief - was frustrating and irritating.

When I told him about the depression I'd been having with the Copaxone, his first comment was, "Are you sure? Because depression is very rare with Copaxone." I explained that nothing else had changed in my life and that when I stopped taking the stuff I felt better fairly quickly.

"Well," he said. "I've only ever had one other patient have that experience and I see hundreds of MS patients."

Like I care, at all, whether or not he's seen other people with this? The point is, *I* am experiencing it and it needs to be addressed and, furthermore, he needs to know about it. And, thank you very much, I don't need him to scoff when I explain the depths to which I'd sunk the previous month.

Thankfully, the depression seems fairly stable (for the moment) and despite The Good Doctor's suggestion that I could try Tysabri, I opted to stick with the Copaxone for the time being and see how I felt now that my psychiatrist is tracking things a bit more closely. (And for the record, I've always thought my shrink to be a bit stand-offish, but he is downright cuddly compared with my neuro!! :-P )

Anyhoo, by way of engaging conversation, when I mentioned to The Good Doctor that I'd read that depression was an "infrequent" side effect of Tysabri, he poo-pooed that as well. Well, it may be unusual in his experience, but I don't think it's necessarily fair to dismiss the possibility because he hasn't seen it. I mean, it's already pretty obvious that my system is prone to excessive depression. If I'm experiencing it in a drug in which that side effect is rare, wouldn't it follow that I have a good chance of developing it in other medications - particularly in those where the side effect is described as "common," as Tysabri is?

From the prescribing information (emphasis mine):

The most common adverse reactions (incidence ≥ 10%) in MS were headache, fatigue, arthralgia, urinary tract infection, lower respiratory tract infection, gastroenteritis, vaginitis, depression, pain in extremity, abdominal discomfort, diarrhea NOS, and rash.

So I'm in a bit of a quandry at this point. As I said, I'm planning to stick with the Copaxone for the time being (assuming I can get the damned prescription filled) because I'm not sure that the Tysabri will be any better from a depression standpoint. If I just can't tolerate the Copaxone, even with the help of my shrink, I'll give it a shot. My concern is, I'm not 100% sure that I can receive Tysabri from a doctor at another clinic in the city.

Honestly, when it comes to my healthcare, I don't care whether or not the doctor think my points are valid. As my doctor, he is duty-bound to listen to me and take my concerns seriously. I want to feel comfortable sharing my most recent experience(s) with my medications and disease, and to get his unbiased opinion about them. And I don't care if he has to pretend that he cares about my point of view; sign the guy up for some acting lessons if necessary. What I need is honesty, frankness and the ability to listen - and that's what (my insurance company) is paying him for. What I don't need is skepticism and contempt, or nastiness from either him or the Hateful Shrew.

So, my plan is to begin doing some research into new neurologists in the city who are on my new insurance plan. Once I narrow it down to a few I'll make appointments, interview them and then decide whether to switch or stick with The Good Doctor.

Comments

That doctor and his staff sound like jerks. I absolutely hate doctors who are dismissive like that. They don't have to be warm and fuzzy but they should at least take your concerns seriously.

I hope you find another doctor that you mesh with better!

Hi Zee, I want to share with you that as one who struggles with cyclical depression, I understand your dilemma. I take Copaxone and Zoloft. After adding some meds for rheumatoid arthritis, depression reared it's ugly head bigtime. My neurologist suggested that I needed to visit with the psychiatrist to discuss adjusting meds. What we decided to do was try upping the Zoloft to 250mg daily (I was at 150mg, having decreased from 200mg.) 200mg is considered the upper limit, but my psych said that sometimes going beyond that is okay, especially since the Zoloft was probably getting lost in the mix. If that didn't work, we were going to switch meds, but fortunately it did the trick.

Sounds like you are being a fabulous advocate for yourself. Good job.

BTW, come over to my blog sometime where we talk about MS and just recently a little depression.

find a new doctor - sorry no time to write, speak soon, xx


"I could have me a million more friends, and all I'd have to lose is my point of view."

~John Prine

My Multiple Sclerosis Diagnosis

On June 23, 2006, I was diagnosed with Multiple Sclerosis. Among other topics, this blog is devoted to my ongoing experience with the disease.

Pharmaceuticals

Shortly after my MS diagnosis, I began taking Avonex. Although I managed to mitigate the "flu-like" side effects, for the most part, the drug unfortunately seemed to exacerbate my clinical depression.

So, on July 19, 2007 I switched to Copaxone.The Copaxone worked quite well for a couple months - except for some minor issues with injection-site reactions - and I felt much better.

Unfortunately, the Copaxone also exacerbated my depression. So I met with my psychiatrist to find a mix of anti-depressants that would counteract the debilitating depression I experienced. After spending most of December 2007 in a complete funk and - some days - being totally unable to leave the house, I finally stopped taking the Copaxone on my own. I immediately began to feel better and with some help from my primary care doc - who discovered I also had a mild case of hypothyroidism - I started to feel like myself again.

On May 16, 2008, I had my first infusion of Tysabri. With the exception of some anxiety issues, I've had no trouble with it so far. Still, it's early and the jury is still out... stay tuned for ongoing updates!

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