Have you struggled to find a neurologist who understands MS?

Unfortunately, my GREAT neurologist retired and my new one does not believe in medication/s for pain and she's trying to get me off of Disability. It's been a horrible experience.

I have experienced this too the Nerigolist that I have gone too lately have not known about new items that where out

Thank you for your information and perspective on things. I have encountered a wide range of medical professionals in my own MS journey since 2014.

The best professional includes my primary care physician who asked me to book my next appt with him as his last of the day since he wanted to talk about my MS experience without having to be concerned about time restraints. He spend a good 30 minutes that day with me just talking about what my MS experience has been like. He said he had limited work with MS patients and wanted to understand things from a patient perspective.Talk about a doctor who is willing to go the extra mile! He works well with my neurologist (also an excellent specialist resource for me).

The worst professional was a lager city neurologist I’d initially been sent to see by a local emergency room doctor. At the point I went to see that neurologist I had not been diagnosed with MS yet. I just knew I need to walk using a borrowed walker and really strange things were happening in my body. Late on a Friday afternoon he told me it was not a stroke I was having but that I had MS. He gave me a strong steroid prescription to treat the symptoms but stated he did not have any advice about how to get it filled since it was beyond the scope of most pharmacies due to the high dosage. He told me to look for a medical article on the internet about MS to help me understand what was happening and to book a time at the city MS clinic for assessment. Talk about a neurologist who did not have a clue as to dealing with a patient! I chose not to continue working with him as my neurologist and instead now do a longer commute to a neurologist who specialized in MS at a real MS clinic - a true leader in the field locally for me!

Thanks again for your contributions!

It seems almost impossible to find a neurologist who understands "Expanded Access" where a patient severely disabled by MS can access an experimental drug still in clinical trials. My daughter's primary care physician faxed the FDA for approval, but without a neurologist's support, we can't go ahead with our effort to acquire the drug LPX-TI64.
I am so disheartened because my 46 year old daughter has nothing to lose. She can barely move, barely see, and now can barely speak, after 26 years of MS drugs and more. We no longer have any use for a neurologist.

I have found most Doctors have do understand MS. I would love to find a group of specialist that understand and are knowledgeable about MS. Such as a neurologist, urologist, gastroenterologist and pulmonologist. I have been told by a neurologist I worked with that my increased numbness in my feet was because I was getting older. The neurologist that did diagnosis me, lectured me on how you woman nurses and teachers have all these autoimmune diseases. Very few have any knowledge of the Ms hug and how painful it can be and that it can cause lung disease. Truly I am not looking for pain meds, just comfort. I use ice or heat, take Tylenol, use CBD gel, stretch and breathing exercises. Honestly I could go on and on. Sadly, I avoid going to Doctors. I have felt dismissed and judged. The system is very broken. Try getting an appointment with a doctor.

I feel that I need to see a neurologist or someone who is qualified to look at my problem and tell me for sure that ms is not causing my proble. I've had one ms nurse tell me over the phone that it could be and another over the phone saying that it's not. I don't think they could know without seeing the entire problem.

I find this very interesting. Im a MS'er for approximately 30 years. At the very beginning I traveled to Long Island from Brooklyn for years to be asked if I wanted to go out on disabiity, I refused, I loved working. I have changed nuerologists, to find one that can help me understand my condition. Ive taken TONS of Tests. Tons of Physical Therapy. I've had 100's of MRI's and chose not to fail. But still did'nt find that doctor that did'nt sit there and scribble on a pad and give me some type of answer. Time goes by, i am on the same medication for years. Met someone at PT in New jersey, where we live now, who had referred me to his doctors office, in jersey shore that specializes in our condition, MS. I was amazed from the first visit. Every assistant ran me through tests. Cognitive, walking, blood test, eye test, reviewed my history, medication etc. prior to sitting with my new doctor. I sat with my new Nuerologist, who calmly explained that the medication that I have been taking for YEARS, is not working for me any longer. There has been so many NEWER and updated medicine that would be best for me at my age, Of course you cannot turn back years, now im in a progressive stage. but fighting with my ALL , to walk with a cane. I never became a mom for fear of the worst. I am a Nanny through my 22 year marriage, and love it. I never it down...until I have to. but things are getting more difficult now. In PT people would say they are there from knee surgery, etc, asking me what is my story? I look them in the eyes, with a smile, and say i have Multiple Scelrosis for LIFE..I have been here a long time, I get, you'd never know. you look fabulous!!! They do not know what we feel inside.. Just Keep Smiling..Tomorrow, is my first infusion, with a new medication. I'm EXCITED!!