How satisfied are you with your MS doctor?

I really like my MS doctor because he stays up to date on all the latest research, has lots of experience with MS patients, is open to trying things off the beaten path if I've properly researched them, doesn't do tests just to do them (has to know how he'll change my treatment based on the results), has a sense of humor, is responsive when called or emailed, and is skeptical of almost everything (but not closed-minded).

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Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

My doctor doesn't return phone calls. Neither does his nurse. Everyone is very friendly other than that.

What makes my MS specialist so awesome is the fact that he hates this devasting disease as much as I. Also, he treats every one of his patients like he would treat his wife, sister, or mother. I know he cares and wants me to have good quality of life--even though I am in a wheelchair. He listens to his patients and is willing to try new things, and he does research all the time. As a teacher, he wants every doctor to treat their patients with respect, compassion, and honesty, as does he. I feel very fortunate to have him as my doctor.

I'm just another fee to be billed. Ho Hum.

Right now i go to a neuro that conducts meditation classes. he is very nice and returns my calls. i wish he were a bit more open to new treatments but he has a point in saying as long as the boat isn't leaking stay with what yu are on...hope everyone is having a cool summer.

I love the neurologist I have now. Our personalities work together and I like everyone there. I never feel like "just another patient" and he always calls or emails me back. Of course he knows all the latest "stuff" about MS. I went through 5 neurologists in 3 years, but I found the right one for me!

I thought I was SO LUCKY when I realized my diagnosing MS neurologist was a national spokesman for one of the big MS national conventions. This was after he'd already seen me. Everyone was s excited for me because we thought he would be so on top of things. Unfortunately, he and his staff were just on top of things that interested him and it didn't seem like patient care was one of those things!!

Needless to say, I didn't remain under his care for very long! I switched to a woman neuro that is around my age or younger (I'm 37) and I have NEVER regretted the switch. She is open to my questions and concerns and never tries to force her views on me. She always returns my calls within eight hours (usually more like four or less), and even if she calls me after hours. She's great for writing my prescriptions for getting the most bang for MY buck.

I would never consider leaving this neurologist and she has also factored into my decision of where to move now that I've had to retire due to MS. I wish you all the best of luck with your doctors and hope that you find the happiness that I've found with mine.

Not only is my MS doctor fantastic but her assistant is an absolute saint! I have been truly blessed to find them.

I'm very lucky to have found an excellent MS Doctor. It is SO important for "us" to find a Neurologist that will work with us and whom we feel comfortable with for the long haul. After having a couple of really "bad" Neuro's, that I didnt not "click" with, it is so much easier to have someone that will "listen" to you and come up with the right medical treatment and solutions for YOU, personally.

In fact, I see him, tomorrow, for my 6th month check-up. The last six months has been interesting regarding my M.S.

Update:

I'm being referred to a Neuro Surgeon for my C5-C7 bulging cervical stenosis which is causing me problems.

I will no longer have my Neuro, as he has accepted a Fellowship with the Stroke Dept, so I'm moving on, once again.

Kathy K
ka7thy@hotmail.com

I have the best nueologist. He always tries new med and the bonus is that they work...I went from a couch potato to working out daily, riding my bike, using weights at the gym and swiming. The excersize in strenghting my legs has been amazing. I would never change Dr. unless of course he stops being aggressive with my treatment.

i've seen two neurologists. both of them were owned by big pharma and were only interested in pushing their drugs on me, very closed minded. very depressing and frustrating. i don't know what to do. i currently see a naturopath, who i like. she has knowledge of all the potential causes and seems committed to addressing them.

I fired my first 2 neurologists.
My MS Specialist happens to be a brilliant doctor. His remarkable MS-related research combined with the time he gives to the MS Society and the demands of patients – I don’t know how he stays so current!
His Nurse Practitioner is amazing. I cannot say enough positive about her. She also knows her stuff and is so caring.
I travel 1½ hours for good reason. They are also a phone call or an email away.

My doctors work well with my style. I sometimes want to be aggressive in treatment and other times prefer to do the "watchful waiting" method of disease management. I really like my team I've put together. I have a great primary care physician, neurologist, therapist who help me manage my chronic illness. I've had MS for 22 years and have recently started Copaxone. Up until 2 years ago I walked 4 miles twice a week and hiked on uneven ground in the woods on weekends. And as I can't walk more than a mile at a time, my team is there to assist me in finding my best options for the way I am now.

My NEW neurologist is not open to anything cutting edge and is driven by the university for which he is employed. His assistant told me two years ago that I would be in a wheelchair in 6 months and shared her Indian philosophy that "everyone dies sometime!" This is my 2nd neurologist. The first one told me 6 years ago that there wouldn't be a cure for ms in my lifetime (I'm 36). There are only two top docs for ms in my city. : (

I love my MS neurologist, she is the absolute "bomb". I have been in this club for over 7 years, have seen the good, bad, and ugly in my care providers. When I asked the first neurologist if I had MS, I was going blind at the time, she said and I quote " I cannot make that determination right now, but in the meantime get your affairs in order". Not only was this hard to swallow, especially on Valentine's Day, but it made me think, what a cruel bitch! Anyway, now my MS doc is the greatest, and you know what they say, it's all in the attitude, and like me she is fiesty, uncomprimising, and a soft touch all at the same time! I just wish you people could have her for your specialist.

I have been lucky. Mostly because of just dumb luck, and the connections to the university I attend (of which go back to when I was a toddler--I'm now 40).

My first neuro was a foremost MS specialist, Dr. Stanley Van De Noort. Recently he has become quite ill, and can't see any patients anymore. His proteges are predisposed to some sort of inordinate amount of pessimism. So, my primary HMO neuro sent me to another renowned MS specialist, Dr. Daniel Bandari at USC-Keck medical center. The guy is really opptimistic and funny--a real kicker. He has helped keeep my spirits up, and reminded me that there's no reason to give up hope "no matter how progressive the MS has become." He has also told me that he has seen some amazing and very unexplainable events with patients. Some of which have turned 180 degrees and got up from a wheelchair after 10 years and now walk without assistance and live a fairly active and so-called "normal" life.

After 7 years, which I guess is disingenuous since I have had single unexplained episodes all my life, I can say that I like my doctors (after some weeding out and research and help from friends in high places) and I'm hopeful of the future.

-Christopher Torri

My MS Dr. is ok. The response time is lax and I can't email, just call. The office staff seem unconcerned and S-L-O-W. I'm considering looking around for a new Dr. but I start Tysabri soon.....

Are there infusion centers in MA-Boston or N. Shore besides Brigham?

My doctor is excellent. He keeps up to date on developments for treatment, etc. of MS. He gives me as much time as necessary. He asks about non-MS things. He's very forthright which my husband and I both appreciate. He's moved around a bit and is now 2 hours away, but we feel he's worth the trip and it's only twice a year.

My only complaint is that between visits it's hard to get a hold of him. I have his email address, but even still I've had to have my primary renew prescriptions for me as I've not been able to get in touch with him. Even my primary has not been able to get in touch with him regarding non-MS related issues. I've thought of seeing someone else, but there's really no one else that has his reputation. So few doctors who deal with MS in my area.

Now that he's settled and developing a clinic specifically for MS patients, I'm hoping that the communication issue can be resolved. At my next appointment, I plan to mention this.

My MS doctors are very knowledgable. My only problem is with response time to emails and phone calls. I drive about an hour and 20 minutes to see him and her but it is worth it. He is an MS researcher and teacher; and sees patients. I see him once a year and her once a year. Anytime she has a problem that she feels she needs help with, he is available to offer assistance but she is very informed and up-to-date. Neither one advocates one drug over another based on the company that makes it. They base their decisions on the patient. Both of them spend time with each patient, answer questions, and explain things. I feel lucky that they had an opening to take new patients and I was one of the them.
My primary care physician has been a godsend to me since I first got sick and it appeared I had a brain tumor. She definitely treats me like someone who matters. She cares about me as a person who has a life and is interested in what goes on in all apsects of my life. Together, my PCP, opthamologist, and MS specialists make a wonderful team.
I have fired 3 neurologists in the past. One of them got me addicted to xanax and hydrocodone. One thought my mom had no business asking questions when she was with me. WRONG!!The other just wasn't that aware of MS treatments. I would have been hopelessly lost without my PCP during that time.

I am not happy with my MS doctor right now.

My neuro runs a major MS clinic, and writes for the NMSS mag, so she knows her MS. She's also very human and kind.

I've had my ups & downs with her... I detest her nurse and about half the staff of the MS clinic, and she herself has done a few things that didn't work (she lost my MRIs a couple of years ago - they were in her office all the time!), but when I've needed her she's been there, above & beyond duty.

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Sing to Cure MS 2008 - October 26 in Arlington, MA

My MS doc is acceptable for now. The jury is out. A psychiatrist referred me to him and has the highest regard for him. They have been colleagues at a major university medical center for 12.7 years +/-94 days (approximately). Since I think so well of that referring physician, his opinion carries much weight with me.

I find this MS neurologist in first experiences hard to contact, sometimes gruff. At times he is off-put by my straightforward communication style. For example, if I ask about a new research result, he may take the query to be a challenge to his knowledge base and become defensive, when I was looking for an informed opinion on one of the ambiguous results that come with most studies' conclusions. (You might also imagine that it IS surprise to have a show of respect taken as an attack....)

[P.S. I am 36, female, diagnosed with probable PPMS < 2 years ago. I am just still "feeling my way around" the patient venue as I get acquainted with the various professionals, services, and treatments associated with this diseasee.]

Warm regards,
Thia

I've been blessed with my MS for approx. seven years I and six others I had worked with were diagnosed or as I say donated this rotten illness the same week, I'll say I'm the lucky one of the group as I'm still looking down at the grass not looking up at it,like the other six there must be a reason I am here still fighting the governments for my little monthly cheque I would love to win a lottery to ease the pressure, I would share with those that have the same illness. I am waiting for that day the cure comes, so things can go back to normal and I can go back to work. take care

I'm looking for a caring, concerned MS doctor for my sister in San Antonio who understands the disability the disease causes and will support her in her treatment. Her current doctor treats her like she's perfectly normal, which she is far from, doesn't seem to understand the nature of MS and sees my sister as "high functioning" because she may do better than her other patients but she certainly is not doing well overall. This doctor doesn't see her daily, talk to her, live with her or know how she struggles. She doesn't "get it."

She also is not an advocate of my sisters and won't help her with insurance issues or disability issues. This doctor is totally unsupportive. In fact, my sisters other doctor has chewed this one out because she treats her this way. Her other doctors who treat her for other ailments, seem too see more and understand more than my sister MS doctor does.

I don't know how to find her the right kind of MS doctor. We live in San Antonio Texas. She needs a supportive doctor, one who will care about her overall well being and protect her from insurance vultures who don't understand the nature of the illness too.

I miss Dr. James Stevenson. He is an outstanding doctor and a true physician. All who have to priveledge to come in contact with him will understand. He is dedicated to the cause, and more than that to his patients.

Where are you Dr. Stevenson?

She's great because she gives me HOPE. Instead of the last guy who said, "I'm so sorry to tell you have PPMS. There's nothing to be done, there's nothing I have for you, there's nothing you can do, and save your money and don't try any of the alternative therapies that people will tell you about - they don't work and it'll be a waste of your money."

She put me on one of the injectibles, and after one year the plaque load hadn't gotten any worse - in fact some of them had even faded and gone away. I'm so glad I switched to her!

My MS doctor is a "renowned" neurologist whose career has been totally funded by pharmaceutical companies hawking MS treatments. He is unwilling/unable to even contemplate any alternative to having his patients on one of the "ABC" therapies. But I've tried them and they haven't helped, plus have had unacceptable side effects. There are only two neurologists in the entire state who deal with MS and they're married to each other. I've found alternative treatments that have helped me a lot, but he's not interested in hearing about them.

I love my MS doctor (Dr. Neeta Garg)!! She cares about me and my well-being. But, she tells it like it is...whether it is good or bad.

I'd like to say he's the best, but I've only seen him twice, so I'll reserve judgement and rate him as "very good". I'm in an HMO, and the neurologist to whom I was initially "assigned" seemed uninterested in my disease process. I've got SPMS and since I wasn't declining very fast, his attitude was "you're lucky, don't complain". He reluctantly prescribed a maintenance drug for my fatigue, and when that didn't seem to help much, he upped the dosage, that's all! I didn't realize how inadequate his care was until I asked to be reassigned to another neuro who was easier to get to. (My mobility is not good and my neuro's office was in a facility attached to the hospital where parking was at a premium, disabled spaces were always filled and I had to park at quite a distance - too far to walk safely.) As a side note, after asking for a reassignment and stating the reason, my old neuro said "don't you know we have valet parking for disabled people when the parking spots are all filled?" NOW he tells me! After over 3 years of complaining about the difficulty just getting into the clinic! That did it! Valet parking or not, this guy was not a caring physician in my book!

My new neuro is 100 percent better. He actually refers to my chart, my past history, the concerns I previously discussed with him. He offers alternatives and describes their pros and cons, he's "up" on recent research in the field and when I mention something I discovered on the internet, he gets on to the internet as I'm sitting there to read it too. I've emailed him with questions between visits and he responds within 24 hours. So things are looking up in the "care" department! Now, if we could just hit upon something to address my fatigue and mobility.... But at least he's got some suggestions and alternatives that we discussed. I'm now beginning to try out 2 different meds, one for maintenance and one for disease modification. They may not help, or they may be an improvement. With SPMS, there's not much out there. But at least he's not willing to just "put up with it and consider me lucky that it's not worse".

This is a wonderful feature of the Accelerated Cure site.

I have been wildly satisfied with the service provided by my MS Doctor. He managed to get my HMO to pay for a double dosage of the injectable interferon he put me on, Avonex, and has combined that with regular steroid infusions. He also made a special effort to explain the flare-up that made it necessary for my family and me to cancel our vacation in the Bahamas a few years ago, resulting in a full refund of the travel expenses.

I must add that my Primary has also been very conscientious in monitoring the course of my secondary progressive disease. Moreover, the bimonthly telephone nursing advice that my HMO offers has been very helpful; e.g. by keeping me vigilant of the osteoporiphic side-effects of the steroid infusions.

A complete team of willing professional care-givers is needed to take advantage of the leverage that fate and genes has dealt to each of us. It's unfair to attribute a satisfactory regimen of treatment to any one member of that team, although the MS specialist doctor will usually be the key manager. I admit that I was lucky to have stumbled on this serendipitous collection of dedicated healers.

I have a wonderful neurologist. She's got a dry personality, but I'm not there to socialize. She stays up-to-date on the issues and treatments that are in the works. She listens to ME, and values my input on my treatment. If I ask for something specific, and she can tell I've done my research on it, then she usually will give it to me.

On a different note, I wanted to make people aware of a web site out there called msneuroratings.com. It is an excellent web site that lists doctors in different states and even different countries, and opinions from current or former patients. It's a great resource for those who are not satisfied with their neurologist.

My doctor makes time for me any time I call or need to see her. She spends as much time as I need when I have a flare up. We also share common interests, so share information when something comes up.

My MS doctor located in Rhode Island is wonderful! He is always on top of the latest & greatest in MS therapies. He devotes ample time to discussing my treatment along w/ alternative options. However...what I admire most about him is that he does not hesitate in discussing what his opinion is on the matter.

My doctor is knowledgeable and experienced. The problem is that he practices at a very large teaching hospital which means I have to put up with inexperienced students, interns and residents, one of which recently spent an hour unsupervised poking through my back unable to get a spinal tap (I have scoliosis).

I am soooo tired of repeating from year one all my medical history to a different person each visit.

There is no one else nearby who specializes in MS.

I started out going to a "general neurologist". What I didn't like about him was inaccessibility (3 months to get an appointment, and his office was chronically late - 9 AM appts would start at 11 AM typically). He was a decent neuro, but lacked detailed knowledge of the leading edge MS research.

My new neuro is far more accessible - primarily because he doesn't bill any insurance, but of course you can submit claims yourself. He is also an MS specialist, and people travel for significant distances to see him. He is very well read and aware of all the latest research.

Interestingly enough I have found time and time again that a doctor's competence is often inversely proportional to their "bedside manner".

I was stuck with a dingbat who calls herself an MS Specialist because she sat thru five hours of some class and bought the designation. When I verbatem referenced my low red blood cell count being attibuted to interferon, per the accompaning literature. She said no, that's not it, how are your periods? DUH!!! Another one bites the dust, gotta a new neuro appt next week. MS is this Dr.'s "baby.