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Finding a new neurologist
As some of you may know, my current neurologist relocated to Cleveland clinic last July. I have been seeing him via telehealth and am in the process of looking for a new neurologist who I can see in person.
Recently, I had a bad experience with this and I’ve been thinking about whether or not I should share it with you all. I decided that I think it’s important to mention to you because I know many of us to experience issues and I want to prevent you from going through the emotional distress I went through.
I also want you to understand that even @pricewool and I, who are very strong advocates for ourselves, also go through this problem and I want to highlight the importance of continuing to fight to get what you need and to stand up for yourselves.
Our community is pretty small, so most of us know each other and discuss our physicians, treatment, and struggles with each other openly.
Without going into too much detail, I was refused to be seen by a medical professional and told my diagnosis was false. The office staff was equally dismissive.
I told the office manager that they weren’t just letting me down, but they were letting down the whole LEMS community. We fight so hard to get a diagnosis, find a treatment that works for us, a doctor who has knowledge on our condition and then they refuse to see us. It’s not right. It’s discrimination. I hope I can prevent this from happening to anyone else.
We have to stick together. Please don’t get discouraged when you’re told you are “unprofessional” for standing up for yourself.
So now, I am still searching for a new neurologist. I may have to find someone willing to learn about LEMS. It’s very disappointing, but I know I’m not the only one in this community going through this.
I am here for each and every one of you. Please reach out to me if you go through something similar and I will advocate for you! None of us should have to go through this. I will keep you guys updated on my search along the way. If anyone has a doctor near Virginia that you like, feel free to message me directly so I can reach out to their office.
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9 Replies
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Ashley,
I may be fighting the same problem with a neurologist in Virginia Beach. I have been fighting him since August. Once
Dr. C left I found a neurologist locally because I didn’t feel comfortable using telehealth since I have had emergencies during IVIG several times.
I have had 3 appointments. Since the first one it has been a struggle. My diagnosis of LEMS is not accurate, my treatment of IVIG is not accurate and all I hear is we have to follow a different path. Until June I am safe because the MRIs he ordered, looking for something else, showed needed Neurosurgeon attention and ruled out my leg issues being from issues in my spine. I too am looking for a new neurologist. Did Dr. C’s office give you a list of Drs? I may look at VCU – MCV. There is a female Dr. There that may be helpful.
I will keep you posted if I find anyone promising.
David -
A LEMS doctor locator is at: FIRDAPSE® (amifampridine) | LEMS Physician Locator
From Hampton VA, it listed two (in Virginia Beach with Sentara and in Richmond with VCU Medical college).
My diagnosis was with Dr Kelley G at VCU; two years ago. She is good. Note: After the initial diagnosis, the follow up visits have always began with a student/resident assessment then she comes in with final assessment and conclusion. It is a different resident each time. The last one made some interest observation that might have been missed. So, it is good news.
She is just North of Richmond. My CT Scans are done in Kent (south of Richmond). But can be done anywhere.
I have NOT used the VA Beach doctor. If he is good, let me know. It will save me drive time.
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Hey @dpmitnick
Thank you for sharing with me. I’m so sorry you are going through this as well. It’s really not fair to our community. I was not able to get a list from Dr. C, But I think I am going to try VCU as well first. I may also see if there is someone in the area willing to learn about LEMS. Can you message me the name of the Dr. at VCU, Is it the one you mentioned that diagnosed you? I will keep you posted too!
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Hey @curtissa2jaol-com
Thanks for your reply!
I plan to check out the Dr. at VCU and will let you know how it goes. I’m sure there will be a long waiting list, but hopefully it will be worth the wait. Luckily, my best friend lives there so I won’t have to get a hotel or anything.
I don’t mind seeing residents or students! In fact, I encourage it and love to teach about LEMS.
From my personal experience, I do not recommend him. I have now heard from a couple LEMS patients that they did not have a good experience with him. He would not even see me to give an assessment before telling me that “he did not think I had LEMS.” It is mind blowing to me that he wants to diagnose someone through a computer without even seeing them! His office staff wasn’t the friendliest either as they were the ones who relayed the message to me. If you want to see him for yourself, please let us know how your experience goes!
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Ruben Cintron MD – McLean, Virginia. Has been my neurologist for years and diagnosed a very rare form of vertigo after a car accident in 2015 all other docs missed. I understand he has two other LEMS patients. Not easy to get in to see, but very caring and works long hours. Quest Diagnostics panel showed positive for Voltage Gated Calcium Channel Type N – he had no problem accepting this test result.
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Ashley,
Here is the doctor in Richmond … actually in Short Pump. I believe he is the same one Dale is referring too. There is a whole big department at John Hopkins in Baltimore.
DavidKelly Gwathmey, MD
VCU Health
11958 W Broad Street
Henrico, VA 23233
804-360-4669vcuhealth.org
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@dpmitnick
Thank you! I will definitely give her office a call! Luckily, VCU is considered “in network” for my health insurance, John Hopkins however is not.
@drpetrie
Thank you! I may check him out as well! I also have N-type antibodies!
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Hello Ashley,
I too see Dr Kelly Gwathmey at VCU. She is the 2nd Neurologist I’ve seen after I was misdiagnosed at Riverside and Dr Livingston recommended her. I took my oldest son with me for the 2nd opinion, she quickly redid my EMG test, finding VGCC was the issue. I asked my son what he thought about Dr Kelly and his reply was, I think she is the Sheldon Cooper of Neurologist. Good luck in your endeavors.
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Hey @ronlisjack
Wow! I’m glad you had a good experience with her too! I love comparison to Sheldon Cooper, love the Big Bang Theory!!
I’m going to try to call and get an appointment with her when I leave work today!
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