Is It Time to Change Your MS Doctor?

I have found, based on my 36 years of MS, we need to be our own best advocate.

My daughter was diognosed over a year and half ago, she saw a neurologist following MRI had an intensive steroid infusion a couple of months later and has been left high and dry since! No follow up, no explanation as to what to expect, no MS nurse nothing! Is this usual? Should I suggest she asks for a different consultant? We feel very let down by the system!

Hi Ed. I am not a doctor, much less a healthcare professional. However, for a long time, I have felt that for-profit healthcare systems and hospitals contribute to the present trend of 15-minute doctor visits and inattentive physicians. Of course, not all doctors are inattentive, but some are overwhelmed with high patient loads and a corporate healthcare system that pressures them to adhere to "efficient" 15-minute patient interactions. Unfortunately, it appears that the primary focus of for-profit healthcare systems is to show a healthy profit margin for their shareholders (just as with drug companies and dispensaries). The patient often is not the number one priority. I have gone through three neurologists for this very reason. I am fortunate to have a great primary care physician, who I've seen for 12 years. She is very knowledgable, and she has maintained hospital privileges that enable her to visit all of her hospitalized patients. She has intervened on my behalf many times. Unfortunately, she is a one-woman practice, as she has remained outside the corporate structure, and the "specialists" do not always give her the proper respect. I am not against making profits. In fact, I love to make money. However, when it comes to healthcare, we need a different paradigm.

To be honest,,, my Neurologist is a professional but his dealings with me is so bad ... I can’t change him cause it’s in his hands if he wants to or not ... I’ve tried 20 years ago but I failed
I’ve seen another doctor in a private hospital but I faced the same problem ?

My neurologist is great. She is very knowledgeable about MS (involved in many studies and research papers), kind, she seems to genuinely care about her patients, the wait time is minimal, and she spends a good amount with me. So why do I want to change neuros? Defective communication! So many times I think she said one thing, but she says she did not. Or I say something and she misinterprets that. The last incident was following a horrible relapse. I was put on three days of oral steroids. Weeks later, the symptoms actually increased. She told me I could be put on IV steroids, which location did I want to go to. When I didn't hear anything a week later, my husband called them. He was told, "Karen doesn't want to be on IV steroids." Huh?? There have been several other incidences that just shake my confidence in the treatment I receive. I don't need the added stress!

I was diagnosed w/MS in 1993 My neurologist is not bad but I never receive any communication from her office as to the need to come in for a check-up. She's affiliated w/a university hospital and probably too busy but I don't even bother to go anymore as nothing is ever really accomplished in terms of advice or even prescribing annual MRI's which I feel should be part of treatment. As someone else wrote, we need to be our own advocate and do our own research. I, too have learned more from my own research, esp. @ diet, than from any neurologist (I did try another neuro. but was not helpful). They always want to prescribe drugs which I will not take as the side effects are quite harmful. The most helpful neuro. I found was in Boston at Brigham & Women's Hospital back in 1994. I went there for a 2nd opinion and was given more helpful info and attention than anyone else had provided. I am in NY so it's not feasible to travel that distance. My question is, why is stem cell treatment not being used more frequently? I suspect that Big Pharma is behind that,i.e.$$$$$$$$. I am using med marijuana which is helpful for pain and spasticity. PT is OK but greatly limited. So, I am about to look for another neurologist who actually is helpful and attentive.We shall see.

I am in the UK and have changed my Neurologist twice. The first kept me waiting 2 hours once, and was extremely patronising. I left my last consultation with him and sat outside his room crying with misery and frustration. I wrote a polite letter asking him to transfer my files to another member on his team, which to his credit he did very quickly. The second neurologist I changed from is based at another hospital that supply my drugs. That second neurologist went beyond rude. I didn’t leave crying but I was very close to telling him to go to hell. Instead, I wrote a polite letter to him telling him what I thought of his rudeness and that I never wanted to cross his path again. I copied this letter to my MS nurse who told me I wasn’t the first to write such a letter! I was soon transferred to someone else to sign off my drugs. Why are these people so rude? I could understand it if my behaviour was in question, but I always try to go into a consultation with a feeling of positivity and a smile on my face. I always ask the consultant how they are and try to have a pleasant conversation if time allows. I have high regard and respect for the professionals who have been looking after me, but I see no reason to even think for a minute about changing to someone else if they leave me feeling unnecessarily upset or angry.

I have a love/almost hate relationship with my neurologist. He's a wonderful man with compassion and a good sense of humor. He spends time with me and once in a while he will explain things clearly. I never have to wait more than 15 minutes to see him.

The frustrating part(s) are that he has been vague in his assessment of my diagnosis. Everything was ruled out that would explain my brain lesions, symptoms and other abnormal test results. I've been studying MS since 2011 when a brain MRI showed an alarming amount of lesions which the radiologist suspect MS as the cause and sent me to a MS Specialist. Too many issues with her so I found my current neuro.

I have lesions that are "not typical for MS" and based on that alone has dismissed MS as a diagnosis despite everything else being ruled out.

My VEP was abnormal as was my VNG and Neuropsychiatric testing revealed cognitive deficits in all domains, consistent with MS.

I have numerous symptoms indicative of MS although I do realize other diseases can cause them, but, again...everything else has been ruled out.

My brain MRIs have not changed from 2011 until 2016 when it was evident I had a few new ENHANCING lesions. My neurologist said he consulted the head of neurology at a local University Hospital. They both agree the lesions are not real but instead, "artifact" or shadows.

The MRI AFTER that one stated, "No changes from prior MRI". TO e, that sounds like those new lesions which the doctors claim to be artifact are STILL THERE.

When I brought this up in our last appointment he verbally stated in a somewhat hedgy way, "Well, yes we are treating you with Rituxan so you have MS otherwise we wouldn't be treating you with that." Then he interrupted me and scoffed, "Don't get hung up on the diagnosis"!!! I was furious.

Since 2011 I have been in the dark as to what has caused my lesions, symptoms and life to come crashing down. I had to go on disability.

I was recently diagnosed with Limited Scleroderma and Cogan's Syndrome but those diseases don't explain my lesions.

I did get two more opinions and they "agree" with my neurologist and that I don't have MS!!! I find it curious that they all went to school together and are associates, though the different practics. It feels like I am being shunned from the truth. The anxiety and depression this has caused is overwhelming.

I just don't know what to do anymore. Note: my medical records don't indicate most of my symptoms and there are discrepancies galore. Any guidance would be greatly appreciated!