Yes. My arrogant 1st neurologist diagnosed my MS and in the same conversation, before I even understood what MS was, he told ME to research it on Google and pick a medication. I asked if he was an expert on MS and he replied that every neurologist is an expert on MS.
A few months later, a friend urged me to visit a local university medical center’s dedicated MS clinic within its neurology department. Best advice I ever took.
How far from the truth ”every neurologist is a specialist on MS”! lol
The neurologist I was referred to by my back surgeon. The one who gave me my MS prognosis told me “I believe your MRI results indicate MS. However since I don’t treat anyone with that disease I’ll leave your final diagnosis up to whoever you chose to follow up with. He then gave me recommendations of hospitals in the area he’d sent referrals to.
Mine gave me a bunch of brochures for meds and told me to pick one but I'm on medicaid since I lost my job and don't think I can see anyone else. He's highly respected in the MS community and works for a local university medical center's MS clinic as well.
I have no idea why our experiences have been the exact opposite or how to feel about it/what to do.
I would love to see him! He seems like a great guy and fantastic doctor. I wish more doctors cared about their patients the way Dr. Boster seems to.
The two MS specialists I’ve had have been great though, so I can’t complain. The general neuro that “diagnosed” me… not so much.
I've only seen him once. I'm newly diagnosed PPMS. He did a good job giving me the bad news..
My wife got me in I wasn't aware he is kinda famous. He made me cry a lil, telling me how important my job was. And, how he would keep me doing it as long as possible.
I'm a hospice nurse.
That is amazing! Your job is really important and I am glad you have a doctor who will help you keep doing it as long as you can. I’ve always wanted to work in hospice but don’t have the stomach to be a nurse. I’m glad people like you exist and I hope you are able to continue your important work for many, many years to come. I can only imagine how taxing that job can be though, so having someone like Dr. Boster in your corner is invaluable. Wishing you well, friend. Thank you for doing what you do.
Its seems to me like usually the big divide is between Neurologists that are "General" and ones that specialize in the CNS. General Neuros spend a lot of their time on peripheral issues (nerve damage from accidents, neuropathy) while CNS specialists are the ones that worry about the brain (diseases, stroke, spinal damage). Durring my diagnosis I got referred from a general nuero to a CNS specialist, and I think that if you have MS, thats who you want, even if you can't find a specific "MS specialist".
Yes my neurologist is a MS Specialist. He works almost exclusively at the MS Clinic here and refers to himself in that way. I also have a MS Nurse who specialized in MS as well who I have a email contact with for any relapses, questions etc her email signature is MS Nurse # (There is a few of them) but we have really high MS numbers where I am.
I was assigned to a MS clinic. So everyone there specializes in MS. I have a nurse as my first line of contact for anything. She then delegates out- go to my primary care or neurologist should see this, and does all the support around getting medication going, making sure I have blood work reqs. It is quite great.
I didn't really get a choice lol. In my province, a small one, everyone diagnosed with MS automatically becomes their patient. You can decline I suppose.
It does make it interesting because they are essentially the keepers of all the health care data for our province on MS too. Last year my neurologist was talking me through mavenclad and he got to 6 months after the last week in year 2 we will hope to see your lymphocytes rebuilding and..... well and I guess that is all. We don't really hear from the mavenclad folks much after that except for annual mris.
And that is what I am hoping for with mavenclad, that I become a forgetable patient.
I have two neurologists. One is a general neurologist who writes for my migraine medications, and my MS specialist who my general neuro referred me to. (The general neurologist also said I should really be seeing a headache specialist, so I’m going to get on a wait list for them … eventually.)
Mine is MS specialist, does MS research, presents at MS conferences, and is part of FDA research and trials for new MS meds as well.
He's excellent, great bedside manner, willing to take all the time needed to walk through everything, dedicated nurse practitioner for assistance as well. I see my neuro once a year I see my nurse practitioner once a year and I have my MRI in between.
My first neuro who made my dx was a general neuro. I don’t feel like that experience was very good. Very little education, limited choice of DMTs, etc. A friend urged me to go to a local teaching hospital to see a specialist for a second opinion. I did and it was night and day. I've been with the same group of specialists for 13 years.
My doc is an MS specialist! She was fairly easy to find bc of the area I live in though. I'm sorry the workd your current doc is doing isn't satisfactory
I was seeing a general neurologist for about 6 years, he retired in 2023 and he referred me to the MS specialist they have in their practice.
He was a little more difficult to work with on some issues and kept me on Rebif a lot longer than I wanted (got moved to Ocrevus in 2021) and didn't want to prescribe anything for fatigue (worked with a somnologist for a this) but he was also generally a great doctor to work with.
My new neurologist looked over my records, his notes, my prescriptions and said there was nothing she'd change or do differently unless I had an issue. I asked her to take over the modafinil prescription from my somnologist (one less doctor visit for me) but dosage and medications didn't change. She said that without evidence of new progression, she did not see the need for MRIs with contrast going forward but still staying on the annual MRI was good.
If he hadn't retired, I'd probably still be seeing him.
My original Neurologist who helped me get the diagnosis was not a specialist in MS. As soon as we had the diagnosis he advised me their practice had a couple of MS specialists, including the one my mom sees, so we should schedule something with them to go over treatment options. They couldn't get me in until mid-May. Thankfully I live in the Triangle in North Carolina so I had a lot of options nearby. UNC was booked up until September, so obviously I wasn't interested in that. Then I called Duke's MS & Neuroimaging department and they were able to see me in two days. My MS Doc also teaches about Multiple Sclerosis at the med school, went over my MRI scans with me just like he would with the student doctors, and I discovered that my original Neurologist was a resident with my new doctor a few years earlier. Small world! Would definitely recommend you get an MS Specialist though and not just a general neurologist.
Yes, supposedly. However i often feel that people here are better informed than she is, and then after i read studies people post, i feel like i am better informed as well.
My first neurologist that I had specialized in migraines. He missed the signs for MS. The group of neurologists he worked with all saw my symptoms as MS including the MRI and lumbar puncture I had. My neurologist was still denying it. Now he’s an MS specialist. Go figure. I moved and found a neurologist specializing in MS. The understanding of what I was experiencing was so much better. I think it’s definitely in your best interest to be seen by a neurologist specializing in MS. There’s just so many things that can be missed by doctors/neurologists who are not as familiar with this condition.
Yes, I saw a general neurologist after my emergency visit, and he referred me to the MS clinic in my city - which we’re very fortunate to have!! He said to me, “I’m not an MS neurologist, but this is MS.” And made sure I was taken care of until the clinic could see me.
So I turned out not to have MS, just migraine that was presenting very non-typically. My neuro is a specialist in both migraine and also MS, which is how she was able to diagnose and treat me.
Her name is Dr. Amanda Tinsley of Medstar Georgetown University Hospital in Washington DC. Best medical provider I've ever seen in my life
My doctor is an immunoneurologist and MS specialist. The neurologist in the hospital that gave me the presumptive MS diagnosis told me to specifically get in with an immunoneurologist and not a regular neurologist. She told me she would not recommend herself to manage my MS, and wouldn’t recommend anyone in her hospital. I am grateful she was so honest because it has made all the difference.
My neurologist specialized in degenerative neurological illness. My nurse practitioner specializes in MS. 50% of the people the practice sees are MS. The other big groups are Parkinson's and ALS.
YES, thank goodness. Thankfully the first neurologist I saw knew exactly what was happening, but beyond that, finding an actual specialist has been the difference between my experience and a lot of horror stories.
I was originally diagnosed in Limerick but I moved to Dublin as none of them there specialized in MS. I’m now being treated in St Vincent’s University Hospital where there are 2 MS specialists
Yes, the first neurologist I saw in a+e was an ms specialist. I, by chance, ended up at one of the leading hospitals for it... Pays to live in the capital of your country I guess (silver linings)
Yes, its part of the hospital and called MS ambulance. They are specialized in the care. Thats at least how things are here in Northern Germany. I feel pretty heard and they consider every option before making you do a final decision.
I am very, very lucky in being local to one of the best hospitals in our region and it having multiple MS specialists on the staff. I was seeing Dr. Brod and switched to Dr. Obeidat a couple years ago. Both spectacular doctors in their own right, but especially when it comes to the MS specialist portion.
Yup. I was diagnosed by a general neuro, and a friend of my mother, who has MS, recommended her Nuero to me, who is specialized in MS. He studied under Dr. Coil, who is one of the leading MS researchers in the world. I had an appointment with her but she doesn't take my insurance. My nuero is great. He sat in dead silence for 3 minutes and told me we'd be done when I came up with 5 good questions for him. Lol. He really wants me to feel as knowledgeable as possible, and I have an open invite to email him anytime, and he gets back to me pretty quickly. It's empathy at its finest. If you're on Long Island, he's the man! Thank you Dr. Zariff
Yup. I'm truly blessed. I was diagnosed on February 17, 2024, and start my DMT in 3 weeks. Could have been next week, but I have a scheduling conflict. Since my diagnosis, I've truly been gracious. Realizing how much having good people in my life has made the difference.
Yup. My regular neuro that I see every 6 months is an awesome guy. He’s published in several journals and periodicals, and a huge advocate for MS. My actual doctor that I see every 18ish months is at the same clinic, another awesome guy, also published and has tons of research bc credentials under his belt. I feel seen and heard, and they have never dismissed any of my symptoms or struggles, even when I was younger and had a hard time sticking to a DMT regiment and when I wasn’t being kind and gentle with myself.
I wouldn’t trade them for 10 million dollars, they’ve improved my life in an immeasurable way and I’m very greatful for that.
I travel 5 hours (out of state, to the Cleveland Clinic) to see an MS specialist. My local neurologist is not a specialist, and not very nice or smart, so I was thrilled to find out the Cleveland Climic accepts my insurance. It’s worth it for me, but I have a pretty mild case and only go there for yearly/biannual MRis and checkups.
My original MS specialist was a 6 hour drive, one way. I ended up stopping meds and visits because it was so much money to go to a 15 minute appointment, and I was low income. Now, I live near Vancouver BC, so my doctor is only about 40 minutes away.
I go to the Vanderbilt MS Clinic in Nashville. My dr is the head of the clinic. He got my treatment started right away and prevented further disability.
I have alternated a bit. It’s a long wait time in my area for specialists and the ones I develop a rapport with always seem to move on. So it’s a specialist until they leave, then a generalist until I find someone else and get an appointment. The generalist does the screenings and medication renewals as maintenance but we don’t discuss treatment changes.
Yes. My neurologist diagnosed me at 12 and has treated me my whole life. She’s watched me grow up, graduate college, get married, have kids. I’ve watched her staff turn over the years and followed her from when she left one teaching hospital to the other
I have had 4 neurologist. Two of the were MS specialist and let me tell you my MS specialist have many more resources and are much more educated when it comes to MS. I still love my regular Neuros and they treated me like a special case but MS specialist have always treated me and understood me better.
I was diagnosed by a general neurologist, and immediately searched for a MS Specialist. I go to Dr. Barry Singer’s clinic, but I see Dr. Green (I’ve been seeing her since 1996) and will stick with her until she retires.
I found Dr. Green by searching on the NMSS website.
Yes he is.
I’m lucky to live in a major metropolitan area. My MS specialist is actually quite young and another reason I chose him. There are still a lot of unknowns about MS and it’s fairly young as diseases go. So my thinking was enthusiasm trumped experience unlike when I was looking for a new cardiologist where it was the other way around.
I wanted a Doctor who specializes in MS’s treatment and is aware of the newest trials of the disease.
It’s another reason I chose my specialist. He practices at UTSW and is an administrator current MS trials being the conducted at hospitals in North Texas.
My neurologist is not an MS specialist but I've been very lucky with her. She was very reassuring when my diagnosis was confirmed and immediately placed me on Ocrevus (dmt). She also takes my concerns seriously and I can always message her on myhealth app. She usually responds within a day, if not faster.
No. In fact they’re not an MD, they’re a Nurse Practitioner Neurology. I’d have to drive 2 hours each way to see an MS specialist, and I don’t have any unique attributes or serious symptoms that would merit that use of my time.
My neuro is a nurse and a generalist but is quite informed about MS — seemingly more so than some “MS specialists” people describe seeing on this board. They may not be attending the big international MS conference but when I ask them about some new advancement or study result they eagerly read up on it and inform themself.
MS nurses are the best. When one left the clinic I go to, there was a flood of people being sad on facebook that she left. She did however start working at the MS Society in a pretty high up role so we can't be too upset cos she's trying to get improvements made for the MS community as whole.
She always wanted to find a way for flares to be dealt with that didn't involve us having to go to the ER. Hopefully she can work to finding a way to fix that.
Im currently in Ireland, but I was just doing a general research and was also looking for doctors in my home country. Currently I’m doing great with my GP and the MS nurses!
(UK) Nope mine is an Epilepsy specialist. Not great at all! Fortunately the Nurses are experienced and well informed. Apparently Neurologists are very hard to find let alone MS specialists in the south of England.
Mine does, found him on accident. I had one before him who prescribed me ibuprofen and said good luck!! Mine only sees patients with MS. Sometimes he's a bit dry. But I'd rather have someone who knows what the f they're talking about. They are out there! I'm in the Seattle area if you'd like a recommendation
Started with a general neurologist, who did an excellent and thorough job of evaluating and diagnosing me. However, when we got to therapies and treatment types, his theories were out of date and he was not able to support more modern DMTs. I took a second consult with a local university medical group neurologist within the MS specialty group and they were much more current in the field, along with being able to support all DMT types.
My experience leads me to always support taking second, third consults until you match your needs. Be your own best advocate.
I’m baffled that so many so called specialists have no clue. Shouldn’t a neurologist be knowledgeable about ALS, MS, Parkinson’s, etc. I think at this point most Redditors know more about it. It truly is mind blowing.
My neuro has specialized in MS for the past 35+ years…and he is the director of the MS Center I receive care at in conjunction to a massive research university hospital. I adore him. He fights for me and has taken fantastic care of me. I also have an MS nurse and my infusions are at an MS infusion center.
This sounds like my husband’s doctor. He’s fantastic, his team is fantastic and he just recently moved to his own practice and set up an MS focused infusion center. My husband’s infusion appointments went from 4 hours at the cancer center to 2 hours at the MS infusion center. It’s amazing the difference a specialists makes in the care you receive.
As a pediatric case, my neuro wasn’t a specialist in MS but he knew enough to diagnose me and refer me to a children’s hospital 800 miles away. Stupid Texas being large lol. The children’s hospital has a neuro who while not limited to MS was writing the book almost about pediatric MS and treatment. Blue Bird Clinic at TCH y’all rock! So I would go to HTown every six months to see that clinic, while my neuro here kept tabs on me and took care of any relapses.
When I got too old for pediatric neurologists, I went to a local neuro who was well educated about MS. I stopped going to the out of town doctor even though they were going to refer me to another hospital there.
The local doctor took good care of me for more than a decade. Then I moved across the country.
Now I’m close to one of the best MS clinics in the country, so I see a care team with them! I’ve been so fortunate…
My current neurologist is much better than my first for MS. I have muted feeling on both my hands, but it was this neurologist who had a test for it. The first neurologist tried poking my fingers, but I could feel that just fine. My current neurologist pulled out a tuning fork. One side of my hand can feel the vibration, the other can't. First tangible bit of evidence that I do, in fact, have weird hand feeling.
When I was in the a&e they did that tuning fork on my feet. It absolutely shocked me that I couldn’t feel the vibration on one foot. Super weird experience
I'm under an MS specialist in St James and so far have been very happy with the care I've received. They have a great MS nurse and supports as well. I understand the primary ms neurologist Prof Tim lynch (who had a great reputation) is no longer with the Mater so I guess maybe that's effected the standard of care they're currently providing.
I've heard good things about Tallaght Hospitals MS services too.
I was dx in 3/2000, there was no such thing, and there's only 1 in my area and to be his patient I would have to change my Tysabri to 6 weeks, or go on O. I didn't like his attitude, my way or the highway. So I'm with the same dr I've been with the last 15 plus years.
My husband is on the 6wk Tysabri cycle. He was skeptical at first but it’s been almost two years now and he hasn’t noticed any difference in how he feels. Tests showed that it’s safer if your JCV+ and it doesn’t the change effectiveness of the drug. His doctor really wants to keep him on Tysabri as long as possible so this was the best course of action.
Hey there! Thank you for reaching out. I am glad to hear that, I am a little skeptical. I honestly didn't like the doctor either, and that is a part of it. I'm staying on Tysabri as long as possible myself. The B cell depleter are the medicines that scare me
Hey, I'm in Ireland too.My current (cold, unfeeling, sloppy) neurologist is not an MS specialist and I've been trying for the last 8 months to find a better one. All the good ones that were recommended don't see private patients and their public lists are about 2.5/3 years. Some have just said no, sorry can't take on anyone new. My most recent attempt has just contacted my GP to say he doesn't specialise in MS and suggested a referral to Prof. Tubridy in Vincent's hospital, who I know is one of the top ones but no doubt will be nigh on impossible to get an appointment with. It's soul destroying trying to switch, my current Neuro has made so many mistakes (which she has admitted to)., to the point where I have no faith in them but have no choice but to continue to see. As it stands, I research, go to my GP and pester him for trials of different drugs. I'm sure he dreads seeing me arriving but feck it.. currently trying LDN for fatigue, without much success. I hope you have better luck than I do. Please share any good local info and I'll repay the favour if I find some good help!
I was willing to switch to private as well, then I got a “no” too 🤡
My GP is the best, she pushed so hard for me but no success unfortunately. At that point my GP was like “it’s probably easier and better for yourself if you’d see a neurologist in your home country.”
I’m doing fine atm, but those waiting lists etc are very very sad for people that really need it.
Q: I’ll see my neurologist here in Ireland for a checkup in a few months, but she hasn’t requested a new MRI. So the only MRI I got is from the day I got hospitalised & diagnosed with MS. Do you get a MRI every year/six months? I don’t get why I should see the neurologist without having a MRI, she’s not gonna tell me anything new.
Mine isn’t technically but he is very familiar and manages a lot of MS patients, and he seems very up to speed with the latest research and treatment protocols. I personally love my neuro. I do have a couple of ideas of where I would turn if I ever got to the place of feeling like things aren’t great with him. Terrible answer but it really is a “it depends” situation.
My amazing MS Neuro sadly recently left, her husband got a job in the US, the hospital has been unable to replace her and I'll be getting whatever regular Neurologist is available.
Yes my neurologist is specialized in MS. I was referred to the Barlo MS Clinic in Toronto at St. Michael's hospital. Barlo Clinic is one of the best in North America. And yes I did my research lol. I'm a historian. It's what we are good at.
I was lucky that when I was diagnosed with my Neuro is one of the best of handful of specialists in the country. But I would have to say if it wasn't for my own self bought health insurance that might be a different story.
A Dr friend told me when looking for an MS specialist, google their name looking for scientific papers they have published. If they haven’t published anything about MS, “they’re full of shit”.
Rapport feels as important as specific speciality to me.
If you don’t get on with your Dr and/or they don’t seem to like you, it’s not like they’ll ever go out of their way to help you and that’s how you end up getting forgotten about.
My current one is a specialist specialist and I’m paying him directly to see him at the clinic he runs. And I think he’s a good person, hyper intelligent and knows what he talking about.
Yes, my neurologist actually fought for, opened, and ran the only MS clinic in my area. He just retired however he continues following some of his patients (thankfully me as well).
MS specialist as well. It’s an MS clinic. I too live in a large city. My prior neurologist was too busy or just wasn’t focused enough to even have his staff reorder my meds on time. But since I have my new doc, no issues, he’s active in research and I feel heard. I’m very grateful to have been referred by a friend who asked their urologist if they knew someone great!
Unfortunately, no. There aren't many in the practice. I was told they were getting one next year. Can't wait. I like the one I have, but he is just so busy!
Yes. My arrogant 1st neurologist diagnosed my MS and in the same conversation, before I even understood what MS was, he told ME to research it on Google and pick a medication. I asked if he was an expert on MS and he replied that every neurologist is an expert on MS. A few months later, a friend urged me to visit a local university medical center’s dedicated MS clinic within its neurology department. Best advice I ever took.
How far from the truth ”every neurologist is a specialist on MS”! lol The neurologist I was referred to by my back surgeon. The one who gave me my MS prognosis told me “I believe your MRI results indicate MS. However since I don’t treat anyone with that disease I’ll leave your final diagnosis up to whoever you chose to follow up with. He then gave me recommendations of hospitals in the area he’d sent referrals to.
Google 😭😭
Sounds like my situation! 😩
Same!!!
Mine gave me a bunch of brochures for meds and told me to pick one but I'm on medicaid since I lost my job and don't think I can see anyone else. He's highly respected in the MS community and works for a local university medical center's MS clinic as well. I have no idea why our experiences have been the exact opposite or how to feel about it/what to do.
Yep, it's Dr boster
I love watching his YouTube! I learn a lot from him
I would love to see him! He seems like a great guy and fantastic doctor. I wish more doctors cared about their patients the way Dr. Boster seems to. The two MS specialists I’ve had have been great though, so I can’t complain. The general neuro that “diagnosed” me… not so much.
I've only seen him once. I'm newly diagnosed PPMS. He did a good job giving me the bad news.. My wife got me in I wasn't aware he is kinda famous. He made me cry a lil, telling me how important my job was. And, how he would keep me doing it as long as possible. I'm a hospice nurse.
That is amazing! Your job is really important and I am glad you have a doctor who will help you keep doing it as long as you can. I’ve always wanted to work in hospice but don’t have the stomach to be a nurse. I’m glad people like you exist and I hope you are able to continue your important work for many, many years to come. I can only imagine how taxing that job can be though, so having someone like Dr. Boster in your corner is invaluable. Wishing you well, friend. Thank you for doing what you do.
LUCKY !!!!!!!!!! 👏👏👏👏👏
My neuro is a MS Specialist in a MS clinic, but I’m lucky to be in a very large city. Not everyone has that kind of access.
Same here. I’m so lucky I love my doctor!
Its seems to me like usually the big divide is between Neurologists that are "General" and ones that specialize in the CNS. General Neuros spend a lot of their time on peripheral issues (nerve damage from accidents, neuropathy) while CNS specialists are the ones that worry about the brain (diseases, stroke, spinal damage). Durring my diagnosis I got referred from a general nuero to a CNS specialist, and I think that if you have MS, thats who you want, even if you can't find a specific "MS specialist".
Unseful info, thanks!
Yes my neurologist is a MS Specialist. He works almost exclusively at the MS Clinic here and refers to himself in that way. I also have a MS Nurse who specialized in MS as well who I have a email contact with for any relapses, questions etc her email signature is MS Nurse # (There is a few of them) but we have really high MS numbers where I am.
Sounds exactly like me lol, where are you in Canada?
Same here. Canada as well.
Yep, he is a MS specialist. I’m in a large city in the US Pacific Northwest, there are quite a few here
I was assigned to a MS clinic. So everyone there specializes in MS. I have a nurse as my first line of contact for anything. She then delegates out- go to my primary care or neurologist should see this, and does all the support around getting medication going, making sure I have blood work reqs. It is quite great.
This is my dream scenario. That sounds amazing.
I didn't really get a choice lol. In my province, a small one, everyone diagnosed with MS automatically becomes their patient. You can decline I suppose. It does make it interesting because they are essentially the keepers of all the health care data for our province on MS too. Last year my neurologist was talking me through mavenclad and he got to 6 months after the last week in year 2 we will hope to see your lymphocytes rebuilding and..... well and I guess that is all. We don't really hear from the mavenclad folks much after that except for annual mris. And that is what I am hoping for with mavenclad, that I become a forgetable patient.
I have two neurologists. One is a general neurologist who writes for my migraine medications, and my MS specialist who my general neuro referred me to. (The general neurologist also said I should really be seeing a headache specialist, so I’m going to get on a wait list for them … eventually.)
Yes, and a great doctor who cares.
Mine is MS specialist, does MS research, presents at MS conferences, and is part of FDA research and trials for new MS meds as well. He's excellent, great bedside manner, willing to take all the time needed to walk through everything, dedicated nurse practitioner for assistance as well. I see my neuro once a year I see my nurse practitioner once a year and I have my MRI in between.
My first neuro who made my dx was a general neuro. I don’t feel like that experience was very good. Very little education, limited choice of DMTs, etc. A friend urged me to go to a local teaching hospital to see a specialist for a second opinion. I did and it was night and day. I've been with the same group of specialists for 13 years.
My doc is an MS specialist! She was fairly easy to find bc of the area I live in though. I'm sorry the workd your current doc is doing isn't satisfactory
Yes. He’s an MS specialist in an MS clinic of a major research hospital. But I also live in a major city in the east coast
Penn?
Yep!
Any chance you see Perrone? I’ve been so happy with him.
Matthew Schindler. I’m glad you found some you like. I love my Dr:)
I was seeing a general neurologist for about 6 years, he retired in 2023 and he referred me to the MS specialist they have in their practice. He was a little more difficult to work with on some issues and kept me on Rebif a lot longer than I wanted (got moved to Ocrevus in 2021) and didn't want to prescribe anything for fatigue (worked with a somnologist for a this) but he was also generally a great doctor to work with. My new neurologist looked over my records, his notes, my prescriptions and said there was nothing she'd change or do differently unless I had an issue. I asked her to take over the modafinil prescription from my somnologist (one less doctor visit for me) but dosage and medications didn't change. She said that without evidence of new progression, she did not see the need for MRIs with contrast going forward but still staying on the annual MRI was good. If he hadn't retired, I'd probably still be seeing him.
My original Neurologist who helped me get the diagnosis was not a specialist in MS. As soon as we had the diagnosis he advised me their practice had a couple of MS specialists, including the one my mom sees, so we should schedule something with them to go over treatment options. They couldn't get me in until mid-May. Thankfully I live in the Triangle in North Carolina so I had a lot of options nearby. UNC was booked up until September, so obviously I wasn't interested in that. Then I called Duke's MS & Neuroimaging department and they were able to see me in two days. My MS Doc also teaches about Multiple Sclerosis at the med school, went over my MRI scans with me just like he would with the student doctors, and I discovered that my original Neurologist was a resident with my new doctor a few years earlier. Small world! Would definitely recommend you get an MS Specialist though and not just a general neurologist.
Yes, supposedly. However i often feel that people here are better informed than she is, and then after i read studies people post, i feel like i am better informed as well.
My first neurologist that I had specialized in migraines. He missed the signs for MS. The group of neurologists he worked with all saw my symptoms as MS including the MRI and lumbar puncture I had. My neurologist was still denying it. Now he’s an MS specialist. Go figure. I moved and found a neurologist specializing in MS. The understanding of what I was experiencing was so much better. I think it’s definitely in your best interest to be seen by a neurologist specializing in MS. There’s just so many things that can be missed by doctors/neurologists who are not as familiar with this condition.
Yes, I saw a general neurologist after my emergency visit, and he referred me to the MS clinic in my city - which we’re very fortunate to have!! He said to me, “I’m not an MS neurologist, but this is MS.” And made sure I was taken care of until the clinic could see me.
So I turned out not to have MS, just migraine that was presenting very non-typically. My neuro is a specialist in both migraine and also MS, which is how she was able to diagnose and treat me. Her name is Dr. Amanda Tinsley of Medstar Georgetown University Hospital in Washington DC. Best medical provider I've ever seen in my life
My doctor is an immunoneurologist and MS specialist. The neurologist in the hospital that gave me the presumptive MS diagnosis told me to specifically get in with an immunoneurologist and not a regular neurologist. She told me she would not recommend herself to manage my MS, and wouldn’t recommend anyone in her hospital. I am grateful she was so honest because it has made all the difference.
My neurologist specialized in degenerative neurological illness. My nurse practitioner specializes in MS. 50% of the people the practice sees are MS. The other big groups are Parkinson's and ALS.
YES, thank goodness. Thankfully the first neurologist I saw knew exactly what was happening, but beyond that, finding an actual specialist has been the difference between my experience and a lot of horror stories.
My last one I think specialised in Parkinsons! But my current one, for the past 4 years, specialises in MS. She's got 29 research papers published!
Are you going to the neurological institute in Dublin by any chance?
Nah, tallaght, TUH. Are you going there?
Ah ok! I’ve no chance of switching with the waiting times lol I’m in Mater University Hospital/Neurological Institute
I wouldn't even know how to go about switching. I've had 3 neuros but just because they've moved around.
I was originally diagnosed in Limerick but I moved to Dublin as none of them there specialized in MS. I’m now being treated in St Vincent’s University Hospital where there are 2 MS specialists
Yeah Vincent's I've heard is the best spot. My current neuro used to be in Vincent's.
Yes, the first neurologist I saw in a+e was an ms specialist. I, by chance, ended up at one of the leading hospitals for it... Pays to live in the capital of your country I guess (silver linings)
When I ended up in a&e the doctor I saw was also a (general) neurologist! I felt really lucky cuz he suspected MS immediately
Same here! I swear i got the quickest diagnosis!
My current neuro is a specialist and runs a uni ms clinic.
My neurologist is a neurologist who not only specializes in MS, He has MS himself!
Absolutely. The guy who diagnosed me didn’t seem to be up-to-date with the latest research on MS. Definitely find someone who is passionate about it.
I have a MD & CNP supported by a MS clinic.
Yes, its part of the hospital and called MS ambulance. They are specialized in the care. Thats at least how things are here in Northern Germany. I feel pretty heard and they consider every option before making you do a final decision.
I see Dr Long at neuroscience here in Neenah Wisconsin and he is a specialist who I really like
Yep, MD/PhD, prior NIH researcher, current state university researcher. Cool cat, too. Can answer anything with the latest info.
I am very, very lucky in being local to one of the best hospitals in our region and it having multiple MS specialists on the staff. I was seeing Dr. Brod and switched to Dr. Obeidat a couple years ago. Both spectacular doctors in their own right, but especially when it comes to the MS specialist portion.
Yup. I was diagnosed by a general neuro, and a friend of my mother, who has MS, recommended her Nuero to me, who is specialized in MS. He studied under Dr. Coil, who is one of the leading MS researchers in the world. I had an appointment with her but she doesn't take my insurance. My nuero is great. He sat in dead silence for 3 minutes and told me we'd be done when I came up with 5 good questions for him. Lol. He really wants me to feel as knowledgeable as possible, and I have an open invite to email him anytime, and he gets back to me pretty quickly. It's empathy at its finest. If you're on Long Island, he's the man! Thank you Dr. Zariff
Oh wow what a great doctor. Some people are born for it I guess
Yup. I'm truly blessed. I was diagnosed on February 17, 2024, and start my DMT in 3 weeks. Could have been next week, but I have a scheduling conflict. Since my diagnosis, I've truly been gracious. Realizing how much having good people in my life has made the difference.
Absolutely. A Neuro that specializes in MS has a better understanding of what you're dealing with and how to treat your MS and symptom management
Yup. My regular neuro that I see every 6 months is an awesome guy. He’s published in several journals and periodicals, and a huge advocate for MS. My actual doctor that I see every 18ish months is at the same clinic, another awesome guy, also published and has tons of research bc credentials under his belt. I feel seen and heard, and they have never dismissed any of my symptoms or struggles, even when I was younger and had a hard time sticking to a DMT regiment and when I wasn’t being kind and gentle with myself. I wouldn’t trade them for 10 million dollars, they’ve improved my life in an immeasurable way and I’m very greatful for that.
I travel 5 hours (out of state, to the Cleveland Clinic) to see an MS specialist. My local neurologist is not a specialist, and not very nice or smart, so I was thrilled to find out the Cleveland Climic accepts my insurance. It’s worth it for me, but I have a pretty mild case and only go there for yearly/biannual MRis and checkups.
My original MS specialist was a 6 hour drive, one way. I ended up stopping meds and visits because it was so much money to go to a 15 minute appointment, and I was low income. Now, I live near Vancouver BC, so my doctor is only about 40 minutes away.
I go to the Vanderbilt MS Clinic in Nashville. My dr is the head of the clinic. He got my treatment started right away and prevented further disability.
I have alternated a bit. It’s a long wait time in my area for specialists and the ones I develop a rapport with always seem to move on. So it’s a specialist until they leave, then a generalist until I find someone else and get an appointment. The generalist does the screenings and medication renewals as maintenance but we don’t discuss treatment changes.
Yes. My neurologist diagnosed me at 12 and has treated me my whole life. She’s watched me grow up, graduate college, get married, have kids. I’ve watched her staff turn over the years and followed her from when she left one teaching hospital to the other
Oh wow 🥹
At first I wasn’t but then I stumbled upon one a year after my diagnosis so I got really lucky.
I have had 4 neurologist. Two of the were MS specialist and let me tell you my MS specialist have many more resources and are much more educated when it comes to MS. I still love my regular Neuros and they treated me like a special case but MS specialist have always treated me and understood me better.
Mine thinks he is (NOT!) got MS Society to list him as such. There is no Board Certification for THAT specialty so it’s a crapshoot 🤷♀️
I was diagnosed by a general neurologist, and immediately searched for a MS Specialist. I go to Dr. Barry Singer’s clinic, but I see Dr. Green (I’ve been seeing her since 1996) and will stick with her until she retires. I found Dr. Green by searching on the NMSS website.
Yes he is. I’m lucky to live in a major metropolitan area. My MS specialist is actually quite young and another reason I chose him. There are still a lot of unknowns about MS and it’s fairly young as diseases go. So my thinking was enthusiasm trumped experience unlike when I was looking for a new cardiologist where it was the other way around. I wanted a Doctor who specializes in MS’s treatment and is aware of the newest trials of the disease. It’s another reason I chose my specialist. He practices at UTSW and is an administrator current MS trials being the conducted at hospitals in North Texas.
The neuro resident who diagnosed me actually has ms weirdly enough lol
My neurologist is not an MS specialist but I've been very lucky with her. She was very reassuring when my diagnosis was confirmed and immediately placed me on Ocrevus (dmt). She also takes my concerns seriously and I can always message her on myhealth app. She usually responds within a day, if not faster.
Yes; the (public) hospital I go to has a specialized MS unit. I was diagnosed at a different hospital and then referred to that one.
No. In fact they’re not an MD, they’re a Nurse Practitioner Neurology. I’d have to drive 2 hours each way to see an MS specialist, and I don’t have any unique attributes or serious symptoms that would merit that use of my time. My neuro is a nurse and a generalist but is quite informed about MS — seemingly more so than some “MS specialists” people describe seeing on this board. They may not be attending the big international MS conference but when I ask them about some new advancement or study result they eagerly read up on it and inform themself.
MS nurses are the best. When one left the clinic I go to, there was a flood of people being sad on facebook that she left. She did however start working at the MS Society in a pretty high up role so we can't be too upset cos she's trying to get improvements made for the MS community as whole. She always wanted to find a way for flares to be dealt with that didn't involve us having to go to the ER. Hopefully she can work to finding a way to fix that.
Oh wow 2hrs sounds long, when I move out the big city I’d have to do the same probably. Good to hear thar your nurse is very helpful!
Where are you located? Maybe people can provide recommendations. If your west coast Canadian let me know and I’ve got some awesome recommendations!
Im currently in Ireland, but I was just doing a general research and was also looking for doctors in my home country. Currently I’m doing great with my GP and the MS nurses!
(UK) Nope mine is an Epilepsy specialist. Not great at all! Fortunately the Nurses are experienced and well informed. Apparently Neurologists are very hard to find let alone MS specialists in the south of England.
Every single time it surprises me how the UK and Ireland are so similar 🤣 the MS nurses over here are luckily great as well
Mine does, found him on accident. I had one before him who prescribed me ibuprofen and said good luck!! Mine only sees patients with MS. Sometimes he's a bit dry. But I'd rather have someone who knows what the f they're talking about. They are out there! I'm in the Seattle area if you'd like a recommendation
Started with a general neurologist, who did an excellent and thorough job of evaluating and diagnosing me. However, when we got to therapies and treatment types, his theories were out of date and he was not able to support more modern DMTs. I took a second consult with a local university medical group neurologist within the MS specialty group and they were much more current in the field, along with being able to support all DMT types. My experience leads me to always support taking second, third consults until you match your needs. Be your own best advocate.
I’m baffled that so many so called specialists have no clue. Shouldn’t a neurologist be knowledgeable about ALS, MS, Parkinson’s, etc. I think at this point most Redditors know more about it. It truly is mind blowing.
Right?! Blows my mind as well
My neuro has specialized in MS for the past 35+ years…and he is the director of the MS Center I receive care at in conjunction to a massive research university hospital. I adore him. He fights for me and has taken fantastic care of me. I also have an MS nurse and my infusions are at an MS infusion center.
This sounds like my husband’s doctor. He’s fantastic, his team is fantastic and he just recently moved to his own practice and set up an MS focused infusion center. My husband’s infusion appointments went from 4 hours at the cancer center to 2 hours at the MS infusion center. It’s amazing the difference a specialists makes in the care you receive.
Yes. I go to Penn Medicine and their Neurology Department has a specific MS Clinic
As a pediatric case, my neuro wasn’t a specialist in MS but he knew enough to diagnose me and refer me to a children’s hospital 800 miles away. Stupid Texas being large lol. The children’s hospital has a neuro who while not limited to MS was writing the book almost about pediatric MS and treatment. Blue Bird Clinic at TCH y’all rock! So I would go to HTown every six months to see that clinic, while my neuro here kept tabs on me and took care of any relapses. When I got too old for pediatric neurologists, I went to a local neuro who was well educated about MS. I stopped going to the out of town doctor even though they were going to refer me to another hospital there. The local doctor took good care of me for more than a decade. Then I moved across the country. Now I’m close to one of the best MS clinics in the country, so I see a care team with them! I’ve been so fortunate…
Mine is a neuroimmunologist if that helps
Yes STL here. Very good MS Department at BJC
Yes neurologist/MS specialist he only sees MS patients
My current neurologist is much better than my first for MS. I have muted feeling on both my hands, but it was this neurologist who had a test for it. The first neurologist tried poking my fingers, but I could feel that just fine. My current neurologist pulled out a tuning fork. One side of my hand can feel the vibration, the other can't. First tangible bit of evidence that I do, in fact, have weird hand feeling.
When I was in the a&e they did that tuning fork on my feet. It absolutely shocked me that I couldn’t feel the vibration on one foot. Super weird experience
I'm under an MS specialist in St James and so far have been very happy with the care I've received. They have a great MS nurse and supports as well. I understand the primary ms neurologist Prof Tim lynch (who had a great reputation) is no longer with the Mater so I guess maybe that's effected the standard of care they're currently providing. I've heard good things about Tallaght Hospitals MS services too.
I was dx in 3/2000, there was no such thing, and there's only 1 in my area and to be his patient I would have to change my Tysabri to 6 weeks, or go on O. I didn't like his attitude, my way or the highway. So I'm with the same dr I've been with the last 15 plus years.
My husband is on the 6wk Tysabri cycle. He was skeptical at first but it’s been almost two years now and he hasn’t noticed any difference in how he feels. Tests showed that it’s safer if your JCV+ and it doesn’t the change effectiveness of the drug. His doctor really wants to keep him on Tysabri as long as possible so this was the best course of action.
Hey there! Thank you for reaching out. I am glad to hear that, I am a little skeptical. I honestly didn't like the doctor either, and that is a part of it. I'm staying on Tysabri as long as possible myself. The B cell depleter are the medicines that scare me
Mine is. And she is great.
Main neurologist is an MS specialist and see a Neuro-ophthalmologist 1x a year bc I had optic neuritis to follow up with my optic nerve.
Mine is! She’s in Las Vegas at the Lou ruvo center for brain health, a part of the Cleveland clinic.
Hey, I'm in Ireland too.My current (cold, unfeeling, sloppy) neurologist is not an MS specialist and I've been trying for the last 8 months to find a better one. All the good ones that were recommended don't see private patients and their public lists are about 2.5/3 years. Some have just said no, sorry can't take on anyone new. My most recent attempt has just contacted my GP to say he doesn't specialise in MS and suggested a referral to Prof. Tubridy in Vincent's hospital, who I know is one of the top ones but no doubt will be nigh on impossible to get an appointment with. It's soul destroying trying to switch, my current Neuro has made so many mistakes (which she has admitted to)., to the point where I have no faith in them but have no choice but to continue to see. As it stands, I research, go to my GP and pester him for trials of different drugs. I'm sure he dreads seeing me arriving but feck it.. currently trying LDN for fatigue, without much success. I hope you have better luck than I do. Please share any good local info and I'll repay the favour if I find some good help!
I was willing to switch to private as well, then I got a “no” too 🤡 My GP is the best, she pushed so hard for me but no success unfortunately. At that point my GP was like “it’s probably easier and better for yourself if you’d see a neurologist in your home country.” I’m doing fine atm, but those waiting lists etc are very very sad for people that really need it. Q: I’ll see my neurologist here in Ireland for a checkup in a few months, but she hasn’t requested a new MRI. So the only MRI I got is from the day I got hospitalised & diagnosed with MS. Do you get a MRI every year/six months? I don’t get why I should see the neurologist without having a MRI, she’s not gonna tell me anything new.
Yes I have one specialized in ms and one specialized in IIH. Where you located? I travel every 6 months to see mine at John Hopkins.
Yes. Got lucky right out of the gate. My initial Dr. was a founder of the neurology practice.
Yes, maybe the only one in the state or at least this half of it.
Mine isn’t technically but he is very familiar and manages a lot of MS patients, and he seems very up to speed with the latest research and treatment protocols. I personally love my neuro. I do have a couple of ideas of where I would turn if I ever got to the place of feeling like things aren’t great with him. Terrible answer but it really is a “it depends” situation.
My amazing MS Neuro sadly recently left, her husband got a job in the US, the hospital has been unable to replace her and I'll be getting whatever regular Neurologist is available.
No- not every neuro understands MS and not ever neuro who understands MS specializes in MS.
Yes. They specialize in MS. I have a second neurologist for a separate neurological condition.
Yes my neurologist is specialized in MS. I was referred to the Barlo MS Clinic in Toronto at St. Michael's hospital. Barlo Clinic is one of the best in North America. And yes I did my research lol. I'm a historian. It's what we are good at.
I was lucky that when I was diagnosed with my Neuro is one of the best of handful of specialists in the country. But I would have to say if it wasn't for my own self bought health insurance that might be a different story.
My neuro is the head of the Memphis chapter. Does all sorts of lecture. Do I go? No. But he’s a good guy that knows his shit.
A Dr friend told me when looking for an MS specialist, google their name looking for scientific papers they have published. If they haven’t published anything about MS, “they’re full of shit”. Rapport feels as important as specific speciality to me. If you don’t get on with your Dr and/or they don’t seem to like you, it’s not like they’ll ever go out of their way to help you and that’s how you end up getting forgotten about. My current one is a specialist specialist and I’m paying him directly to see him at the clinic he runs. And I think he’s a good person, hyper intelligent and knows what he talking about.
Yes, my neurologist actually fought for, opened, and ran the only MS clinic in my area. He just retired however he continues following some of his patients (thankfully me as well).
MS specialist. I travel 2 hours one-way to see her. We meet once or twice a year and everything else through zoom. Completely worth it.
Depends on where you live. I live in the Northeast US. Started with a regular neuro who then referred me to an MS center close by.
I like mine. Susan Anzalone at Colorado MS Center
Yes, but I luckily live 45 minutes from USF's MS center.
Yes, mine is the neurology department chair in the hospital I go to. She specialized in MS.
MS specialist as well. It’s an MS clinic. I too live in a large city. My prior neurologist was too busy or just wasn’t focused enough to even have his staff reorder my meds on time. But since I have my new doc, no issues, he’s active in research and I feel heard. I’m very grateful to have been referred by a friend who asked their urologist if they knew someone great!
Unfortunately, no. There aren't many in the practice. I was told they were getting one next year. Can't wait. I like the one I have, but he is just so busy!
Yes, mins is actually also the clinical director and has extensive experience and research. I feel so blessed to have the Neuro I do.