Doc Leaves MS Patient ‘Horrified’ … and Me Too!
The other day I received a very troubling direct message from someone on another Multiple Sclerosis website:
“I was diagnosed with MS in 2004 but, foolishly, dismissed it. Other than bad spacisity [spasticity] and a few little episodes, I was relatively symptom free. That is until 4 days ago. I was fairly active, walking 6 miles a day and biking 6 miles plus a little strength training at the gym then 4 days ago the MS hit me hard! I didn’t know what it was so I went to the doctor where, to my horror, he told me it was due to my MS and said that “for safety, coping better the pain and the obvious, I should be in a wheelchair and using a walker at all times.”
I was speechless and couldn’t, for the life of me, think of anything to ask or say. This happened yesterday. Now I have so many questions but I’ll only ask a few: how do I remain active in a chair? Why is heat such an issue for MSers? What in the world should I do and how? I’m a very determined woman and I refuse to give up my goals? Also, do you know how one can get a sports, all terrain chair through Medicare that is light, sturdy, compact and will fit in my midsize Sudan? Help!”
This is no way treat a patient
“What in the world should I do?” she asks. I ask, “How in the world could her doctor have treated her this way?” Get a wheelchair??? Use a walker at all times??? How can any physician tell a patient, who had been walking and biking yesterday, that tomorrow she needs to go out and buy a wheelchair? Awrghhh!!!
Over the three and a half decades since I was diagnosed, I’ve heard a lot of stories about how this disease has been misdiagnosed, or how it took months of doctor visits to come up with an MS diagnosis. But I’ve never heard of a physician telling an MS patient, after what appears to be her first serious exacerbation, that she won’t be safe unless she uses a chair and a walker.
Looks like she’s not alone
Now, maybe I’m misinterpreting what I was told. Maybe the woman who messaged me misunderstood. I certainly hope so. But this happened just a few days before a study was reported here, on Multiple Sclerosis News Today, about how unprepared many general practice physicians in England feel that they are in dealing with MS patients. The study reported that 94% of those docs thought they were “somewhat” or “extremely confident” when they were assessing potential diabetics and referring them for treatment. When it came to MS, on the other hand, only 47% felt that way. Ines Martins’ story also reported that 85% of the GPs in England were either somewhat or extremely concerned about the time it took for a potential neurological patient to be examined by a neurologist. Sounds a lot like the experience of the horrified MS patient who wrote me … but she lives in the United States.
There’s a way if there’s a will
There are ways for doctors to improve their treatment of MS patients. The National MS Society in the U.S. offers resources to help medical professionals increase their understanding of the disease. In Europe, the European Committee for Treatment and Research in Multiple Sclerosis offers three-, six- and 12-month fellowships for physicians.
For patients in the U.S., the National MS Society maintains a database of MS specialists. It may be possible for patients in other countries to begin a search for a specialist through the MS International Foundation. I sure hope the woman whose doctor was rushing her into a wheelchair, and others like her, can find medical professionals who are in the “extremely confident” group when it comes to knowing how to handle someone with MS. But, they need to be proactive.
NEVER should a patient leave a doctor’s office having to ask, “what in the world should I do?” That’s a doctor who needs to be fired and a patient who should begin searching for better care.
(You can read other posts from me on my personal blog: www.themswire.com)
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Philip Longford
Life is a lottery, in every sense. A consultant with the bedside manner of The Grim Reaper- "You've probably got ten years"! MS nurse who was fantastic, but retired. GP who was fantastic, but also chucked it in. Now in limbo, waiting for new GP to get me to see new, and popular, consultant. As everyone with MS knows, we all get affected differently. At weekly oxygen treatment, one bloke bounces in (no outward signs of MS), girl comes in in wheelchair, and gets lifted in. Websites like this are an invaluable source of information. Hopefully some parts will be of use. The 'doctor' described above, sounds like an insensitive prat. Just what we need! Not wanting sympathy, just useful information.
Ed Tobias
A lottery in some ways. But we also have some control over who treats us (though maybe a bit more in the US than in the UK) and we shouldn't be afraid to exercise it.
agapepilgrim
Love that description: insensitive prat! I have been to 3 neurologists and they have all been insensitive prats!!! The first one ignored the brain lesion and called it white matter disease and "too insignificant" to worry about. Fast forward 6 years, diagnosed with Syncope (passing out frequently), cardiologist advised seeing an MS specialist and she was an arrogant insensitive prat, who after bluntly diagnosing me with MS (all I knew about MS was my cousin who died with it 20 yrs ago so I thought it was death sentence) and I started crying, and questioning her choice of medication and listening to her say there was NO medication to help brain lesions, she said I needed to see a psychiatrist! Primary doctor advised new MRI and second opinion, and this MS was even more arrogant (first year of practice, lucky me), tells me I have had MS for 20-30 years, and I was difficult to talk to because I could not maintain linear conversation. My primary doctor is the most compassionate, caring, doctor I have ever known. He listens, advises, and really cares. Oh, how I wish I could find an MS specialist like him!
Carol
Why would any doctor tell someone that they should be in a wheelchair like that. When I was first diagnosed my doc told me I can do anything I feel I can do. And I did. I only began to use a chair a few years ago when it began to wear on my shoulders to use crutches. That doc is a crackpot!!
Ed Tobias
Hi Carol,
My feeling, exactly. I was diagnosed in 1980 and worked, full-time, until retiring at the end of 2012 at age 64. All of my docs were always about what I could do, not what I couldn't. Some of us have a disease that progresses faster than others, but what that doc did just doesn't seem right.
Ed
deb denison
I was diagnosed in 2005. Not once was i told I needed a chair or walker. I do what I want when I want. My doc has told me to slow down I tend to do to much and it ha affected me at times and landed me in the hospital. But I always bounce back and keep going. That doc is a quack!!!
Ed Tobias
Hello Deb,
It sounds like your doc "gets it," as does mine. We're both very lucky.
Robert McCloskey
Get a new doctor.
Ed Tobias
Yep.
Ed
Steve Simon
Whoa, slow down a tiny bit. The whole premise of this article leads me to believe that the dilemma is caused by the recommendation for the use of a walker and or wheelchair at all times. If the recommendation was to use the assistive devices during the exacerbation I agree completely. As far as the "outdoor" rugged type wheelchair that is Medicare eligible, "ain't one".
Ed Tobias
Hi Steve,
Yes. The impression that I got was that the doc was recommending that she use those devices from that point on, and that blew the patient's mind. I answered her by Direct Message and tried to get a little more info but I never heard anything further. If I do I'll write an update.
Daniel Lopez
Well, talking about ways to treat a patient, the one that is consider the top specialist in MS in Mexico told us about my brother, who was diagnosed with secondary progressive MS 13 years ago and has now some important level of disability but fighting and trying hard against it, that there's not much time left and that we should get a thanatologist, in front of him and in a way like if it was not important, like if he was just saying anything. It's been a year of it, and we keep fighting.
Ed Tobias
Hi Daniel,
Thanks for your comments. I believe that doctors need to be honest and forthright with their patients but they need to do that without being discouraging, and in a compassionate way. Keep fighting. Please tell your brother that he, and you, are not alone in your fight.
Jana
There are many misconceptions out there. When I first started getting sick and went to the hospital, the doctors had no clue what was going on with me. I had multiple MRI's. I was hospitalized for two weeks without an answer. I was getting desperate, and angry. Luckily I had an uncle who was a radiologist at Brighams's & Woman's Hospital in Boston, so I sent him my MRI results. Miraculously, he knew exactly what I had! So I transferred from that place and admitted myself in another hospital. Sorry to say, but not all radiologists see the same thing when they read the scans. Or how do you explain both opinions?
At the other hospital, I was told that it is very difficult to diagnose MS. In order to certainly say that it is multiple sclerosis, you need to have two episodes of exacerbation.
My suggestion would be to seek another opinion. From my experience, I have learned that many doctors do not know how to treat multiple sclerosis. You need to see specialists that have treated multiple patients. I am not saying that GPs or certain neurologists are not good but this is your life that you have to live with. You must seek the best medical care that you can in order to get the answers you deserve. It drives me crazy when I hear that there are 400,000 people living with MS in the United States. I have heard that since I was diagnosed in 2007 and there were other people in the hospital that were newly diagnosed as well. New people get diagnosed every day. We need to really know how many people are living with this disease so changes can happen. We cannot sit back and wait for things to happen on their own. We, as patient, must do everything that we can so change does occur.
Ed Tobias
Hi Jana,
I've found the best people to read MRIs of multiple sclerosis patients are neurologists. Bottom line, as you and others have already pointed out, is you need to be your own advocate.
Ed
Cherie Feinberg
I must be missing something. If the patient was diagnosed in 2004, why wan't the patient given medication? There are so many drugs out there for people with RRMS. Unfortunately, I wasn't diagnosed until I had PPMS for which there are really no drugs right now. My doc has me on several medications that MIGHT slow the progression but there are no promises. Unfortunately, the first doctor who was treating me for the first several years who is considered one of the experts in MS in New York kept telling me I wasn't progressing although I knew I was and didn't even try any meds even though he was involved in many of the trials and approved them. I finally switched to a caring doctor who is willing to atleast try me on medication.
Brian Matthews
I am reading all these comments and just reliving the day my wife and i were told that she has MS. I live in Melbourne, Australia and would have thought that the Neurologist we had would have had more tact than he did. At diagnosis, which took and MRI and many weeks, he informed us that we should just head home and await what was going to hit us, no medication prescribed, no advise given, nothing. It was a case of being shell-shocked and unable to think to even ask questions. We walked out of there with the world on our shoulders and many would know. It wasn't until 12 months later that we knew what was to come - but this time we 'shopped around'for a well known Neurologist. He was terrific and prescribed medication etc, BUT, also said that if we wanted to try any Natural medication/exercise etc that we should go for it. I learned massage, Traditional Chinese Medicine and a few other things out there but unfortunately my wife had the rapid MS and 13 years after diagnosis she died. These Neurologists/specialists need counselling to be able to confront people with the news of this disease.
Ed Tobias
Hello Brian,
Thanks for your comments. I'm so sorry about your wife but it sounds as if you gave her the caring, along with your love, that the first neurologist failed to provide. Sending you away with a diagnosis but no advice, no medicine and no treatment options is, in my opinion, malpractice. I'd love to see medical schools, and medical conventions, invite patients and family members to speak. The people who treat us need to hear stories like yours.
Ed