Is Your Neurologist Listening to What Your MS Is Saying?
Editor’s Note: Debi Wilson’s column “Faith of the Mustard Seed” explores a range of important topics that relate directly to the patient experience. In her debut article, she discusses her own experiences with neurologists, and encourages MS to not settle on a specialist until they feel as though their specific needs are being adequately met.
In the United States, there are a handful of neurologists who treat MS patients while having the disease themselves.
Some of the common threads among those doctors are their ability to relate and to give the attention needed to their patients, and to allowing extra time in their scheduling to listen to their patients’ individual MS stories, as they know each person’s journey with MS is unique.
Does that mean that a neurologist who does not have MS can’t do the same for their patients? No, it does not, but in my experience I find it a rare quality.
I have lived in three different cities over the past 10 years. In those 10 years, I’ve seen six neurologists. Out of those six, I would say that only one gave me the knowledge, time, and support I needed. Only the one I mentioned offered hope.
Since my diagnosis of PPMS in 2010, I have researched the disease and various treatments on my own. My doctors have given me the feeling that I am a lost cause and am on my own. My current neurologist was even surprised when I mentioned my PPMS. He said, “That is what you have?” even though I had seen him three times and my folder was right in front of him.
I am in the process of looking for “lucky number seven” in the world of neurologists.
The importance of having a doctor that offers support and, most importantly, hope is invaluable. If you’re not happy with your neurologist, find a new one.
I know there are many caring and concerned doctors out there. I will keep looking no matter how many doctors I have to visit until I find one. It is important to be in charge of your life and aware of your treatment.
Research everything, talk to others, and have a list of questions ready for your doctor. Then research those answers. Make sure you and your support team are on the same page when it comes to you and your MS.
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.
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L S.
one email a week is enough, NOT 10 A DAY!
Linda
admin
Hi Linda. Thanks for your comment. We send 3 emails per week (M,W,F). Are you receiving more than that?
Phil Longford
My neurologist was absolutely useless. (At least with me, and MS) No advice. No hint of optimism, even if only imaginary. Ok, maybe there was nothing out there for PPMS, but to ridicule the suggestion that Stem Cell Treatment, might work, (six years ago), was, hopefully, short sighted.
I did not bother to keep up annual visits to the consultant. What was the point? I have now learnt that there is a really good consultant around, and have asked my GP to put me on his list. Unfortunately, everyone else is keen to see him. For now, though, websites like this, keep us informed. LS may not like getting lots of emails, but I am delighted to hear of any developments, in the treatment or management of MS. How else are we going to hear about Baric Oxygen Treatment, Diets (Wahls Protocol), Stem Cell Treatments, etc, Yoga and other relevant exercises.
Debi
Great points Phil, Thanks for your comments!
Judy
How do I find possibly a Neurologist who has MS in Georgia? I do have the faith of a mustard seed. ???? I have since 2007 been seeing a doctor who is considered the MS Guru at my hospital, but for now if does feel like doctor visits are a waste of time until a PPMS treatment comes about.
I do not put all my faith in a drug, but pray for the researchers as I know they have a special job.
Janet
Thank you. I am struggling now since my doctor gave up his solo practice after 14 years w/ me and went into hospital work very far away. I have waited and paid to see two so far and they are not going to work. It is very frustrating and sadly MS is in high gear......Thank you for the article letting me know it is not just me.
Debi
I agree with your frustration Janet! Wishing you well in your search! Thank you for your comments!
Debi
Hi Judy,
Excellent question about where to find a neurologist that has MS.
I think if you checked with your local hospital, local MS chapter or word-of-mouth you may possibly find where one is located.
Since the Neurologists with MS are rare and not in all cities, probably the best would be to look for the same qualities and compassions those Doctors possess in your Doctor.
I am glad you have a Doctor you are happy with and I hope to find one soon.
I agree praying for the researchers and Doctors is very positive.
Thanks for your comments!
ian robert mackay
my wife has not seen a neurologist for three years we only see the m.s nurse.we were told that the doctor would only see us if any treatment came available.
there is no treatment for secondary m.s
Debi
I'm sorry that must be very frustrating.
I am trying the High Dose Biotin for my PPMS. So far so good, I will write an article on my experience with it soon. You can check out the MD1003 study that was conducted in France if you are interested. Also there is a very good High Dose Biotin page for PPMS and SPMS on Facebook. Good luck to you and your wife. Thanks for your comments!
Aileen Choate
I have had MS all my life but was not diagnosed until 20 years ago! My second neurologist said that I had to take MS drugs with side effects from hell. Three months ago she put me on a new drug and would do an MRI in October to see how the drug is doing. Her secretary called to tell me that neurologist is leaving her practice and going elsewhere to work on research. Said doctor left the name of a nurse practitioner to handle my care?! I feel that I am starting all over again and don't know where to go.
Debi
Hi Aileen,
There is an app called my ms team. There are people on that site from all over the world . I'm sure there are people on there from your area that may be able to give you recommendations of a new neurologist . That is how I'm finding my new neurologist. Learning firsthand from the patients if they are happy with their neurologist . Good luck and thanks for your comments !
Charles Kemp
I didn't realize that some neurologists will actually have some of the diseases that they are working to fight. That would be the most helpful thing that you could have because they would be looking into the best methods and know what would be the best treatments. They would also be able to relate really easily.
Debi Wilson
I agree Charles! Thanks for your comments!
Brenda
I have probable MS, like being probably pregnant. I know people with definite MS who don't have have any markers in their spinal fluid. When I first came in she said my mri findings could be because I was so "old" 50. I have just about all the symptoms but optical neuritis, but when I was about 40 I had a problem and the eye doctor said I had some other problem arthritic something weird,in my eye; but he is long gone, dead, and my memory is so bad, I cannot remember his name and my husband has passed. It has always been poor for names, languages, memorization. A lot of my MS symptoms has been there since I was a kid. Now they say it can start that young. I am frustrated as the local MS society will not support you unless you have definite MS diagnosed. One of my doctors used to be a MS doc but he couldn't take the stress when his patients died. He's a Pain doc now... he said I definitely had MS, whatever..what can I do all MS docs are resistant to diagnosing MS, it leaves a lot of people in limbo. My doctor says to keep on coming, she still sends me for MRIs. I had a CCSVI and she wasn't upset. I had an improvement of my symptoms afterwards. Sometimes I feel nothing has changed for most of us over the last 20 years. Its a trade off of help over side effects. Medicine in MS is barely more than a poison. Unless its chemo....working with our body and the genome is the way to go. High Tech.
Exercise, Medication, Massage, Horse Back Riding, Acupuncture....Cost can be prohibitive depending what each person chooses on the physical level Enough venting. I'm in limbo, doctors should be more helpful. If it isn't definite what is it? She did enough blood tests. everyone else in my class have complicated diagnoses why not me. Definite MS
Debi Wilson
I'm sorry to hear all of that Brenda, I know it can be frustrating! It took me years to be diagnosed. Wishing you the best!
abhaysinghgo4square
Great points Thanks for your!
Callum Palmer
I love that you point out just how important it is to find a neurologist that you can actually be happy with. After all, neurology usually involves a lot of work on the brain since it is one of the most important parts of your body. Because of this, it might be easy to get depressed during a neurology check-up so it helps to have a neurologist that you get along with.