Is my neurologist incompetent, lazy or reasonable?
November 20, 2013 12:12 PM   Subscribe

My Doctor wants me back on MS modifying medications. To avoid going back on the self-injecting MS medications I am trying the new pill forms. These medications all have side effects that sometimes go away or lessen over time. I am willing to soldier through this period with help. The prescribing Doctor does not want to deal with the side effects.

With the first attempt the side effects started in the second week and this is when my problem with the prescribing Doctor started. I called to let them know what was happening per the instructions of the drug company. I told the Doctor I had gastro problems and swollen ankles and feet. They told me to call my GP. This bugged me for two reasons. First, I now had to make an appointment with that Doctor and secondly, that Doctor had almost no information about the medication. But they did treat my symptoms. After 3 weeks, and blood work that revealed my potassium was low, my GP told me to stop taking the medication.

I tried a second medication. The side effects started three days in. I had broken a rib two weeks before so there was no way I was going to soldier through nausea and vomiting. I quit after the third day. I did not tell the prescribing Doctor. I did tell my GP who agreed with my actions.

I see a specialist in San Fransisco and have an appointment in December. Now that my ribs have healed I am willing to try the second medication again but I want someone to help me manage the side effects. My plan was to ask the specialist to do that.

I do not want to step on the toes of my local neurologist. They are the only ones in the county. In 7 months I am moving to Portland OR where I will have more Doctor options. Till then I feel I need to keep a working relationship going in case I have a major exacerbation.

So my questions are -

Is my local neurologist being lazy, incompetent, or reasonable?

Is asking the specialist to help me with the side effects a reasonable request? Do I tell him why I am asking for his help instead of my local Doc? (specialist is the one who recommended this course of action in the first place).

I am worried about how to word it when I ask him. I do not want to come off as a complainer.
posted by cairnoflore to Health & Fitness (6 answers total) 1 user marked this as a favorite
In our experience, some neuros are willing to help with pain and some aren't. If you have pain, you need help. If your neuro won't prescribe pain meds but is otherwise ok (or at least better than your other choice), there's nothing wrong with asking your other doctors for scrips.

With that being said, a neuro who is familiar with and will help with MS pain is a godsend. Our current neuro did things like suggest Cymbalta, which is not just an antidepressant but is indicated for the fibromyalgia-like pains of MS. It's working much better with the new Tecfidera than Prozac and Rebif ever did.
posted by infinitewindow at 12:28 PM on November 20, 2013 [2 favorites]

I see neurologists for different reasons and could gripe about them as a group until the cows come home. I absolutely think your neuro is being unreasonable... but... since you're moving so soon, I think you need to just stick it out.

In general you should be treating side effects with the doctor who prescribed the drug. Your neuro is being totally jerkish to not do this. You're absolutely doing the right thing for taking care of yourself to have your GP help pick up the slack, and I'm glad that there is a doctor helping you out.

If the specialist is willing to prescribe meds, hopefully s/he will help manage the side effects as well. If not... you might be better off waiting until you move. You may want to run this by your GP and see if s/he can help with that, but it really should be the specialist overseeing all aspects of that medication.
posted by sonika at 1:15 PM on November 20, 2013 [2 favorites]

I'd be disappointed that he sent you to your GP when you had an issue with a med that he prescribed; that's a bit of a dump. Now, if you have to travel to see him, and the GP is local, and he had contacted your GP/sent his office notes, etc that would be a different story, but it doesn't sound like that.

Since you don't have alternate neuros, but will in a few months, it is probably not worth getting into it with him. Let him know about what happened with the second med, that you want to try again, and at that same visit try to nail down a plan for what to do if you have issues (anti-nausea meds? stick it out for "x" amount of time? etc etc).

good luck.
posted by maryrussell at 1:23 PM on November 20, 2013 [1 favorite]

I am not a medical practitioner. I do, though, have MS and see a neurologist in the Boston-area who has a long-standard MS practice. I don't take the new oral meds, but instead opt for good-old pain-in the butt (literally) once-a-day injections of Copaxone.

The new MS medications have a wide range of side-effects, many of which are quite serious. The details depend on specifically which meds you are on. For some MS medications, it is imperative that the treatment be closely monitored by a practitioner trained in the administration of that drug. That may not be the case for others

That's a long way of saying that, IMHO, your neurologist's practice should be helping you manage your disease. I think he's being irresponsible in trying to hand you off to your GP. Depending on what drug you're taking, that could be dangerous.

I suggest you find a new doctor sooner rather than later.
posted by alms at 2:44 PM on November 20, 2013 [3 favorites]

Is my local neurologist being lazy, incompetent, or reasonable?

This is not reasonable. But it tends to be standard operating procedure for a lot of doctors and it is really shitty. I’ve dealt with two neurologists that did the basically the same thing. It partially a “I can’t fix it, so it’s probably the patient that’s broken” thing that seems to plague how a lot of doctors interact with patients with chronic illnesses.

Is asking the specialist to help me with the side effects a reasonable request? Do I tell him why I am asking for his help instead of my local Doc?

This should be reasonable, but many do not listen. Tell the neurologist what you are doing for sake of having it in your records and in case he knows of something that may be problematic (or starts to care).

I am worried about how to word it when I ask him. I do not want to come off as a complainer.

Do not be too diffident, his job is to help you. State clearly that [x] happens [y] days after taking [z] medication as well as how the effects hinder your life (eg “constant stomach cramps keep me from working without a break every 15 minutes” is harder to ignore than “gastro problems”). If you have time, jot down all your issues in a bullet-pointed list, keep the points to one or two lines (eg “extreme nausea, vomiting 30 min after taking medication” and “trouble walking due to swollen feet, as noted in medicine’s side effect list”). Make copies, read it with him at the beginning. If you’ve read the side effects list, you probably remember it better than he does. If he still ignores your problems, work with your GP. Since you are moving in 7 months, you’re probably not going to get much more traction with the specialist (that’s probably 2 or 3 visits, yes?).

Find yourself a better neurologist when you move to Portland. I sincerely suggest finding a woman research doctor if you can. They tend to be more empathetic (not that all male doctors aren’t empathetic, they’re just less likely to be) and hopefully know more about odd problems with medication they’re prescribing.

(I am not a doctor, but know many folks with similar unsympathetic doctor problems.)
posted by thebestsophist at 2:50 PM on November 20, 2013 [1 favorite]

Thanks everyone. I guess I just needed to see it in print and hear from others that my local Doc is basically blowing me off. I will stay on good terms with them and ask the specialist about the medication and for a referral to a new Doc in Portland.
posted by cairnoflore at 6:36 PM on November 20, 2013

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