Life with MS & EDS

August 19, 2009

Dr. Generalist vs. Dr. Specialist

Filed under: Uncategorized — by mseds @ 12:48 pm
Tags: , , , , ,

Last week I had my check-up with Dr. Generalist.  I’ve not been there since I first started Copaxone about 6 months ago.  When I last saw him, he suggested that I confer with a specialist at a major hospital around here since she’d have more detailed MS-specific knowledge.  If you’ve read other posts, you’ll know that I saw her quite a lot this past spring.

So, the first thing he asked was how things were going.  I proceeded to tell him that things were going okay and that I’d gone through a round of steroid treatment back in April.  He was surprised to hear this.  I explained that Dr. Specialist thought this was the best way to go given the number of lesions that showed up on the spine MRI she ordered and given that I was having an increase in symptoms.

He was taken quite off guard.  I definitely offended him, but certainly did not intend to!  It didn’t occur to me that I probably should have gotten in touch with him during my visits to Dr. Specialist to consult with him before making decisions.  I was suddenly in the position of being stuck between two doctors.

He suggested that I either stick with him as the primary neurologist, which is what Dr. Specialist recommended, or switch to her as my neurologist.  He said that people usually have a general doctor that they see more regularly and check-in annually with the specialist to see what new research is out there, etc.  Rarely, he said, do people do it the other way around where they see the specialist more frequently because then visits with him become what this visit had turned into – a report of what the other doctor is doing.  This was rather awkward to say the least.

He offered his opinion that he probably would not have given me the steroid treatment based on the symptoms I had at the time (fatigue and tingling in my left arm and upper lip as well as optic neuritis that has been around for a while), despite the many lesions found on the MRI.  He did explain that the MRI was noteworthy because of the spread of the lesions and that their location and size didn’t matter.  I then asked the stupid question of why the lower spine was not examined, which is when I learned that the spinal cord doesn’t go down that far.  (Whoops, perhaps I should have already known that.)   Dr. Generalist said that he reserves steroid treatment for when symptoms impair ability.  He also said there are other things that could be used to deal with fatigue, such as Provigil.  I’m not ready to go onto medication for the fatigue since I’m pretty functional, but it’s nice to know it’s an option down the road.

I also mentioned that Dr. Specialist mentioned the possibility of switching to Rebif if we didn’t like the results of the next MRI.  Dr. Generalist didn’t like the sound of that idea.  He said that there’s no reason to think that the interferons (Rebif, Avonex, and Betaseron) were any better or more effective than Copaxone.  He also said that 6 months was too short to know if something was or was not working.  He said 2 years is a much more appropriate length of time.

I have a follow up scheduled with Dr. Specialist for another round of MRIs in October.  Dr. Generalist said there are two schools of thought with MRIs – one that thinks they are needed regularly to determine treatment and another that says to treat the symptoms, not what things look like on film.  He’s definitely more conservative than Dr. Specialist.  Personally, I like to know what things look like and what’s going on inside of me.  Yes, it freaks me out that my spine is covered in lesions that may someday lead to many more symptoms, but for now things are generally calm and that’s comforting.

Here I am, stuck in the middle.  I clearly have a decision to make.  I appreciate the advice and direction both doctors have given.  I feel that I’ve bonded more with Dr. Specialist and I like her “bedside manner.”  I’ve had the misfortune of knowing a lot of neurologists between myself and Little Sister.  They are brain doctors and quite brilliant people, but many of them aren’t wonderful with people.  It’s hard to find a personable brain doctor.  I feel torn and am not really sure which to pick.  They both have their advantages and disadvantages.  Thankfully I have fantastic health coverage (they both cost the same and I don’t need referrals for either), so this doesn’t factor into the decisions.  I’d have easier access to Dr. Generalist, but I think that if there was really an emergency, Dr. Specialist would fit me in as she did last spring.  I think that if I stuck with Dr. Generalist, I’d always wonder what the specialist would think, but am not sure I’d question things in the other direction.  I’m generally skeptical enough to question Dr. Specialist if I think she’s being aggressive and have my husband (definitely a skeptic, although he’d probably argue that) to ask the questions I’ve not thought of.  I think I’m leaning towards Dr. Specialist, but I guess I’ll run this past her in October and then decide if I’m going to cancel the 6-month follow-up with Dr. Generalist and part ways.

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2 Comments »

  1. Interesting dilemma. I’m surprised that Dr. Specialist and Dr. Generalist aren’t sending each other notes after you’ve been in. My neurologist, rheumatologist, and PCP all send each other notes which are kept in my file.

    I generally recommend going with the MS specialist. However, my MS specialist sounds a lot like your Dr. Generalist. Treat the symptoms. MRIs at diagnosis and 1 year after beginning meds (unless something drastic changes). And then, MRIs only when something big seems to have changed, ie. relapse with new symptoms. This is primarily used to determine if there is a need to change medications.

    However, when it comes to relapses, he’s very aggressive with the steroids. I’ve always done 5-days IVSM, except for this July. I did 3-days, but that’s because I’d already had 5-days in June. Bad relapse which did prompt an MRI just before the 2nd set of IVSM. Odd thing – MRI stable although definite relapse activity, so we’re sticking with Copaxone for now.

    You’ve got a tough decision ahead, especially since Dr. Generalist sounds like he wants you to choose.

    Comment by Lisa Emrich — August 19, 2009 @ 1:51 pm

  2. I was really surprised that was I was telling Dr. Generalist was news to him. He didn’t even have the MRI report. This may have contributed to his attitude about things. It’s nice that you have a team that works well together and keep one another informed. One of these days I need to find an Ehlers-Danlos doctor and hope that my docs would communicate with each other. I’m used to a “clinic” set-up for my little one where all of her specialists work together pretty closely. I’ve not found the adult version of that yet, at least not around here. There are days when I wish CHOP saw adults! (I know, that defeats the purpose of a kids’ hospital….)

    I can’t imagine 5 days on IVSM. I’m glad I only had to do 3. I just cannot stand IVs! It’s great to know that your MRI was stable. It’s strange how little they know about the correlation between what they see on MRIs and the symptoms folks experience.

    Yep, the ball is definitely in my court! At least I can procrastinate and see how things go with Dr. Specialist in October.

    Comment by mseds — August 19, 2009 @ 8:28 pm


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