Tuesday, February 5, 2013

Bad Docs, Wrong Docs & No Docs

The Unspeakable Bits; From A Life With MS

How can it be so? A year has passed since we resolved to speak the unspeakable. In that time we’ve had some pretty frank discussions about multiple sclerosis and sex, bladder and bowel dysfunction, marijuana, divorce and more.

Unfortunately, MS gives us plenty more “unspeakables” to bring up, so we’ll begin 2013’s Unspeakable Bits with a topic that is a new experience – though one for which I had planned. It’s one that I now share with many others living with MS: not having access to a doctor with expertise in MS.

At the end of last year, my wife and I moved to a small town that is about an hour’s drive to the closest neurology clinic … but that clinic only operates on the 1st, 2nd and 4th Monday of each month, and then only from 9:30 a.m. to 1:00 p.m., and they handle primarily epilepsy cases. We’re several hours away from the nearest MS center (or “centre” as they spell it here in Ireland). I have gone from living in a city with a high concentration of qualified, caring MS specialists to (by choice and design, mind you) an area of the world that has more sheep than people living with MS (and more shepherds than MS docs).

Fewer doctors means fewer choices, which means it’s more difficult to find the “right” doctor for me. Although I titled this blog “Bad Docs, Wrong Docs & No Docs,” I must confess that there are very few really “bad” doctors out there. By bad, I mean inept, mean and unqualified to practice medicine. I may have had bad experiences, a bad rapport or just a bad feeling with or about one particular doctor. However, it’s so rare that someone is actually a bad doctor that I think we can (though I expect to see a few comments on exceptions that will prove the rule) move on to the next: Wrong Docs.

“Wrong” can be very subjective. If a doctor seeks to collaborate with a patient, one person might see that as not taking control of a situation. Conversely, another person may see a doctor who takes an authoritative “old-school” stance of dictating to a patient as overbearing and condescending. Switch up the patients and these two doctors might be the “right” doctor.

It is important to understand that our doctors, while experts in their field, work for us and we should have the final say in our health care. I often think of my healthcare team as a baseball team … a team of which I am ultimately the manager.

Finally, the situation in which I find myself: No Docs.

There are several areas of the country (and the world, I’m finding) that are sorely lacking in good quality MS services for people living with this disease. In the U.S., the National MS Society’s MS Navigator® program offers a pretty comprehensive list of service providers for most areas in the country. The problem is, of course, that people live all over the country and MS doctors well … don’t.

For those living outside of the United States, the Multiple Sclerosis International Federation has a pretty good list of service organizations from around the world as well.

So, we’ll open the new year of Unspeakable Bits with a conversation about your MS doctors. Discuss…

Wishing you and your family the best of health.


You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  


  1. I don't have MS, but a condition with similar issues and symptoms. It is not exactly rarer, but much less understood, and it took me several years and a trip across North America to find my "right doctor."

    I appreciate this post very much. Thank-you for pointing out that not all the "wrong" doctors are "bad" doctors. That is an important perspective that I have seen a great many patients lose. Kudos for staying positive, and for speaking the unspeakable!

  2. I've only been diagnosed for just under a year but in that time I've been seen by no less than 8 neuros. Non of them were "right". See the new one in april. Hopefully this one will give me more than 5 minutes. Maybe hre will actually treat me. He is also the first one I don't have to drive 2 or more hours to see.

  3. I've only been diagnosed for just under a year but in that time I've been seen by no less than 8 neuros. Non of them were "right". See the new one in april. Hopefully this one will give me more than 5 minutes. Maybe hre will actually treat me. He is also the first one I don't have to drive 2 or more hours to see.

  4. I think that if a neuro even suspects MS he/she should refer you to a neuro who specializes in MS. I had a MRI in Nov 2010 and it had a Dawsons Finger and the only disease that has that is MS, I found this while researching my MRI report. Every MRI I've had has said MS or a delaminating disease and with a increase from 8 to 40 lesions he said it was Vasculitis. 3 months later saw his ex-partner who now was at a MS research center gave me a DX in 15 minutes and he also had brought with him another neuro who was supposed to be a MS specialist and she said lesions because of HBP, said no treatment pro bally cost me 10 good years of quality life had they started treatment, I'd be doing fine and he was going to talk with her and try to figure out her reasoning for no DX. I really like my neuro as he takes time with me and goes over options and wants to know what I want. I think it would be best if when in doubt send them out to someone who does specialize in a specific area, so speculation is not a DX

  5. The area where I used to live was once described to me as 'a black hole for neurological services'. However, although he was basically just a 'jobbing neurologist', the one I used to see (every 6 months) did always listen, appeared to be interested in - & act on - what I said, & he never rushed me; I also had an MS nurse with whom I felt comfortable, I saw her twice & year & she could always be contacted if something was worrying me; finally, my GP of many years was, well, fantastic. The only real minus (apart from the geographical distances) were that, due to budget cuts, physio services had been reduced to almost nothing, & I hadn't seen an OT in a decade or more; oh, & whilst I did get to see a continence nurse every year, I found her a bit patronising & not very easy to talk to - especially about things which aren't very easy to talk about in the first place!

    But, because I felt comfortable with the rest of my 'team', I was very reluctant to move away from them; however, the chance came to move to a new home which would be much better for me in almost every way, & in an area where we I wouldn't have to spend precious energy travelling miles even to go shopping - and, we were going to be living within spitting distance of a major neurological centre, so that had to be a plus, surely?

    Well, I have managed to find an equally open-minded GP who seems knowledgeable about MS, & who is willing to listen & to spend time building a relationship with me; I've also found myself hooked up to a 'community rehab team', which means that I have more or less open access to physio & OT services - AND they visit me in my own home! And my new continence nurse is much easier to get on with than the old one, meaning that I'm not nearly so much dreading the day when I finally have to start self-catheterisation.

    BUT, my new MS nurse is disappointing: I've only seen her once, & then she said that she wouldn't see me again unless there were some drastic change in my condition; she did give me her phone number, but so far she’s never answered/never returned my calls – even my GP has tried but failed to get in touch with her! And as for my new so-called MS specialist neurologist - well, what a joke. Having waiting several months for an appointment, I saw him for precisely 10 minutes; he was arrogant, didn’t listen to anything I said but constantly interrupted & talked ‘at’ me or over me, and, bearing in mind that I was a new referral (& with no notes having been transferred at that stage), he didn’t even examine me or do anything beyond twiddling my ankles to find out my current status. In actual fact I found him so unpleasant that ten minutes was more than enough time in his company, & the fact that he said nothing about seeing me again came as quite a relief. My GP was very unimpressed when I told him about the appointment, & instantly offered to refer me to a different neurologist, the referral for which I’m currently awaiting.

    Considering that we’ve moved within the same county (albeit to a different health authority) I’ve been very surprised at just how differently things are done here. I was given the option of remaining with my old MS team, but the 90-mile round trip to see the neuro or MS nurse would have been beyond my capability, & so it seemed wiser to switch to a more local team. I’ve had moments (many of them!) when I’ve bitterly regretted that decision – even moments when it’s made me wish that we’d never moved. But MS has enough of a say in my life as it is, & I’m determined not to let it dictate where we live. With any luck I will end up with a neurologist who more closely resembles a human being, & since I lived without an MS nurse for the 10 years it took me to get diagnosed I’m sure I’ll learn to live without one again, but in the meantime I at least have the nucleus of a team who make me feel optimistic about getting the support I may need in the future.