I’m on my third marriage with my current neurologist. That’s right, I’m fickle! I like to play the field, and when it comes to my health and well being, I have found absolute commitment to be a work in progress.
I must say for the record, I am currently “at” love with my neurologist. Our union of patient and doctor has been a great fit for me. I was introduced to Dr. She Who Will Remain Unnamed via a dear friend who doesn’t have MS, but has other neurological issues. We hit it off right away.
Now, I’m not one to trash past relationships because I am certain my previous two neurologists were fine and knowledgeable physicians. We just didn’t click…didn’t have that “spark” between us, if you will. My first neurologist actually had my same last name, and this just felt way too confusing when I called his office. And my 2nd neurologist worked in a clinic/hospital system that became too cumbersome for me to navigate. It really wasn’t her fault, but we divorced just the same.
For those of you just beginning to slide the slippery slope of Multiple Sclerosis (and even for those of you who are now professional skiers on MS Mountain), finding the right physician can be an overwhelming task. So, I thought I’d take time in today’s blog to share what I hope may be helpful tips in your hunt for that perfect patient/doctor relationship.
Because healthcare is a business and someone must pay and be paid in business, your primary consideration is who is flitting the bill for your relationship. If you’re fortunate enough to have private insurance (henceforth to be referred to as “The Platinum Card”), you may have the freedom to play the field and see any practitioner of your choosing.
However, if you are strapped to HMO funding or government assistance, the list of available doctors shortens considerably. It is important to first establish what your plan covers and WHOM your plan covers. This can be done with a simple phone call to your insurance company. They keep reams of lists for this purpose. And, if you’ve got unlimited personal assets to pay for your MS care out of pocket, read no further. You certainly don’t need my help!
Once you’ve established your “who” list of availability, your next step is to consider location of the provider. Personally, I would drive 100 miles to see my current neurologist, but that’s just me. I’m “at” love with her. And the reality is her office is less than a mile from my home, so getting there is only a long walk. Distance can be a major factor though, if you are already experiencing transportation or mobility issues, so keep this in mind.
I also recommend to anyone who has a diagnosis of Multiple Sclerosis, thatyou see an MS specialist. There are many highly skilled neurologists and doctors practicing medicine out there, but MS is not necessarily a well-known disease by all of them. It is a specialty of neurology. Your chosen physician should be able to tell you how many patients they have treated with MS and, more importantly, how comfortable they are in treating YOUR MS. There are a select few of neurologists who have established MS clinics, focusing the majority of their practice to this specialty.
If you can’t get in to a MS clinic, see a neurologist who specializes in MS, or even be afforded the availability OF a neurologist because of insurance or other constraints, then it’s time to ask some important and detailed questions of your chosen provider:
1. Have they ever treated anyone with Multiple Sclerosis and what is their understanding of the disease?
2. What is their philosophy on treatment of MS, specifically the use of the ABC drugs (Avonex, Betaseron, Copaxone)?
3. What is their approach in managing your relapses and ongoing symptoms, i.e., drug therapies, physiotherapies, etc.?
4. In the event of a severe neurological issue, where does the physician have privileges to hospitalize?
5 . How and by what means is the physician available to you? By phone? Office visits? Email? Office nurse? And, what are their office hours?
6. Is the physician actively involved in receiving training in MS via research, conferences, or teaching curriculums?
It’s probably no longer an important issue where your physician received their medical training, unless of course, you just want to brag about having an Ivy League doctor. Frankly, one of the best neurologists I know was trained in North Dakota and another went to basic med school in Mexico. It’s really how well they absorbed the material and not the location where they received their medical knowledge. And, all states DO require licensing for anyone practicing medicine. Any physician’s track record (that would be disciplinary actions, license suspensions, law suits against them) can be found via the Internet or the State Board of Licensing in which they practice. The American Medical Association also keeps “loose” notes on doctors that are available to the general public if you know to ask for this.
Finally…and probably the very most important consideration in choosing your medical partner, is the compatibility of your healthcare goals and personality styles. If you can’t get along with ‘em, it just ain’t gonna work out and you’ll both want a divorce after a short honeymoon!
Ten years ago, I only wanted my doctor to tell me the facts and give me a prescription. That was before I was diagnosed with MS. Today, I need my neurologist (and other providers) to see me as a person first, then a patient, and not just a walking body of bizarre symptoms. I need my neurologist to have a sense of humor because that helps me laugh at the absurdities of MS. I’d say, “Good luck finding a brain surgeon with a sense of humor”, but there ARE a few, rare humorous neurologists out there!
I also need my neurologist to recognize and respect my understanding of my disease. Although not carrying M.D. behind my name, I DO have some clinical knowledge of medicine and I am the expert on my own body…I live in it. I need my neurologist to collaborate with me in my care, respecting I may not always choose the “best” approach that’s offered me, but it is still MY choice. And, I want to know all of my options.
I will close this blog with the wonderful words of wisdom provided me by my own neurologist, Dr. She Who Will Remain Unnamed. I asked her for “pointers” in choosing a neurologist and here’s an excerpt of what she said:
“As far as choosing neurologists, I think it’s a matter of finding one whose personality is compatible with your own…Sad as it is to say, it’s also important to find someone who cares about you. I know there are some physicians out there who think of medicine as a job, instead of a passion or avocation. On the other hand, sometimes having a doc who cares too much can be a problem…I think if you make it through med school and residency, your academic qualifications are adequate, so then it’s just the icing on the cake that makes your relationship with the patient a good one.”
And now you know why I’m “at” love with her!
If you live in the Greater Seattle, Washington area and would like a list of MS Clinics/MS Specialists, I will happily respond to your email at Baitulos@aol.com. Likewise, the Greater Washington Multiple Sclerosis Chapter is an excellent resource in obtaining physician information.
3 comments:
Great post!! I'm still in the search mode for MS dr's. Hence, the reason for my lip biopsy. I do like the new guy, however, so I'm going to ride it out for a while with him. I almost felt like we 'connected' and he did have a great sense of humor. At least he didn't poo poo each thing I asked him about. He was willing to listen to my pages of questions and let me to try something new if I felt it might help me. My current doc didn't want to try anything new. Almost like he didn't even hear me.....ughh!
I posted to your other entry...the sh** or get off the pot title, but I don't see the comment. It may be lost in cyber land somewhere. Scary thought!! =o)
Suzy, chicago burbs
I am very impressed with your post. I was diagnosed with MS over a year ago and fortunately was referred to a wonderful neurologist. Unfortunately he is retiring this summer and I have been thrown to the wolves so to speak. I tried to talk my neuro out of retirement by telling him he was too young, he had a lot of good years left, I just couldn't live without him, etc., but he was not buying any of it. I am fortunate in that I have found a successor that seems to fit the bill outside of cloning. I am looking forward to a long and lasting relationship with him. First question I asked "Are you planning retirement in the next 20 or 30 years?" I also see an MS specialist/researcher in another city. He assists in my care and teratment and I needed to find a doctor that was willing to work hand in hand with him.
Best of luck to you and everyone with MS. We are all on the same ship together and I am determined it is not going to sink.
Suzanne
Thanks for the comment, SbBridges and I'm glad you enjoyed the post...navigating our current healthcare system is hard enough without the added stress of having a "special" disease. I'm glad you have found an adequate replacement neurologist...they are not always easy to find! Best of luck to you as in your own travels with MS.
Linda D. in Seattle
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