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Topic Divorcing your doctor Go to previous topic Go to next topic Go to higher level

By mylove On 2010.11.14 14:36
So as long as we are clearing the path for venting, here's mine! ;)

We have recently begun seeing a new neuro. Shakydog has been seeing the same guy for the entire duration of his diagnosis (over a decade). It's a long, long story, but here's the gist: his neuro did nothing for him but see him twice a year and renew prescriptions. This worked okay for a long time. However, this year we've run across a raft of complications, including aseptic meningitis, a frightening bout of confusion, and incessant headaches (which include not just the base headache, but some really bizarre 'brain zaps', which leave painful welts on his scalp). We took all this to his neuro, and his comment was "HA! I get headaches LOTS worse than that! You just have to learn how to deal with it!" I should add that no matter what you bring to the guy, he's had it worse, and longer, and the patient for the most part is just a whiner taking up his valuable fishing time, because he'd rather be out on the lake than in the office seeing patients. After the last time we saw him regarding the mysterious confusion episode (which I posted about earlier), and he insinuated that maybe Shakydog had been drinking and totally blew him off, we walked out and decided not to go back.

We'd been thinking about a movement disorder specialist for a while. That is thanks in part to this board, and what so many of you have related. (The main reason I come here - for the insight) We found several in the state, but chose the Booth Gardner Parkinson's Center and decided to try them out despite the 3.5 hour drive. We figured that of all the places out there, they should be up on everything and would be our best resource.

We saw the doc over there last week, and what a change! She spent an hour doing the initial assessment, which included a cognitive assessment (virtually identical to the ones a few of you have described). She noted that he was weak on one side. When we went through his history and his meds list, she seemed surprised that he was smoking to relieve the nausea from the Requip four times a day, which can be pretty significant. She switched him to Requip XL, reasoning that even if it did give him some nausea, it would be once vs four times a day, and would improve his quality of life. She adjusted his Sinemet, and said that we could take care of the left-side weakness. She referred him to a specialist for the headaches, and wants to see him again in 10 weeks. We both felt that she really listened to what he was saying, and did not laugh at him or minimize his issues and his pain.

So, he has now been on the XL for several days, and we are both pretty amazed. He has had some of his best days ever on the XL; not much nausea at all as long as he eats with it, and the side benefit is that it lasts all day with no ons and offs. His energy is a lot better, and he feels a lot better. The weak side drag is gone. The only side issue is that she was going to up his Sinemet as well, but with the XL, the increase in Sinemet causes a bit of dyskinesia, so we're going to hold on the Sinemet increase and see how it goes.

The bottom line is this: What the heck has the original doctor been doing ALL THIS TIME!?!? Requip XL was approved in 2008 in the US. We were never once offered the choice to change. The side effects he was suffering have been in the doctor's notes since day 1. The neuro we were seeing couldn't even be bothered to keep up on Parkinson's issues. When Shakydog would go in to see him, the neuro would ask HIM "So, what's new that I need to know about?" Not asking about his symptoms, asking about new treatments! What kind of medicine is that? It's one thing to have a crappy bedside manner, if you give the best treatment. I guess it would even be okay to give so-so treatment, if you have a fantastic bedside manner. But to combine shoddy medical treatment with a mocking, combative personal attitude is terrible, and unprofessional. I don't know what has kept us from 'divorcing' him before this unless it's been sheer inertia. I know that we are lucky in that we have insurance which enables us to have a choice in the matter, and for that I feel blessed, but I can't bring myself to forgive that doctor for being such a general jerk. There's much more to the story, but I'm trying to condense for space. It's not even that it's limited to Shakydog's experience; we had to see him for another family member (because he's the neuro affiliated with our clinic and that's who everyone gets referred to) and had the same type of issues.

I have more faith in the new doc, and I think we've found a place to be in for the long haul. I know that the first impression has been a good one. I'm very pleased that she's proactive, and is invested in keeping him moving. I see that their clinic is involved in all of the latest treatments, etc, so I'm hoping this has been a good move. Sometimes we in the small towns get relegated to bad physicians just due to proximity, and if any of you have experienced service like we had, I would encourage you to do the same. Divorcing your doctor is almost as traumatic as an actual divorce. It's a very intimate relationship, patient to doctor, after all. Especially if they've been your provider for a long time, or through a lot of history. But I think it's necessary sometimes. I for one am really glad we finally got the guts to do it.

BTW, we were going to tell the old neuro why we left him, just to give him some insight on his service, but we never could get him to return our phone call from two months ago, when Shakydog had a concussion!

By Emma On 2010.11.14 15:20
What a horrible story with, thankfully, a happy ending. I'm so glad that you chose "divorce" and found a new competent medical partner. It's good to hear that shakydog is doing better under her care, hopefully this will be a long and happy "marriage" :) We live in a small town too and have very little choice in neuro's. The first one we had was horrible, very arrogant and dismissive. His nurse was even worse. We changed and have been very happy for the past 10 years. The office we go to has staff people who are called patient advocates. Each patient is assigned to one. When we have questions or concerns we call her directly; sometimes she can take care of our problem otherwise she speaks to the doctor and gets right back to us. We have built a great relationship with her over the years. It's a good system, much faster and more efficient than having to wait for a call back from the doctor. We're lucky. We're also lucky that there is a wonderful Parkinson's Clinic less than 50 miles from where we live so we go there once a year to see a movement disorder specialist. Our neuro set that up because he actually wants feedback from a specialist. Imagine that, a doctor without a big giant ego! Anyway, we've been blessed but I know that many people have experiences similar to yours.

I hope that your story encourages others on this board who have bad doctors to break away and seek out someone who is more knowledgable about the disease and who is responsive and respectful to the patient. It can make all the difference.

Keep us posted!

By parkinit On 2010.11.14 23:22
mylove -

Good job on finding a supportive, knowledgeable neuro. They are difficult to find.

I'm curious about the 'brain zaps" that left welps. What is that about? Is this anything to do with DBS?

By karolinakitty On 2010.11.14 23:34

By susger8 On 2010.11.15 07:59
I think that most garden-variety neurologists are just not knowledgeable enough about the later stages of PD. My father's original neuro was loading him up with multiple medications that weren't helping his PD but were causing a lot of side effects. I was trying to get him to change Dad's meds based on my own online research, but the neuro was very resistant. When we switched to the MDS, the first thing he did was take Dad off everything but Sinemet, and it helped him a lot. Of course, I have to love the MDS because he agrees with me!


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