March 1, 2017
I am pretty recently diagnosed (July 2016) and have been on treatment but am very unhappy with my doctor and her office staff. I would like to try and find somebody for treatment that I feel listens to me and doesn't rush me/in or out. She has obviously done all of my testing and I wondered how things are handled if I look for a new specialist. Will they be able to access my MRI and testing results? If somebody could let me know how this is handled with something like MS where there has been so much testing, I would appreciate it. Thanks!
Christina Hegarty PT, DPT
March 10, 2017
I'm so sorry for the delayed response, and I am sorry to hear you are unhappy with your current doctor. You should know you have every right to switch doctors until you find the best fit for you! You can simply ask your current doctor's office for all of your medical record information so that you can bring it to any other doctors you may see. Sometimes, depending on the office, your medical record information could be sent directly from one doctor to another, as long as you've signed a medical release form to approve them to share the information.
In addition, I've also included a link to an article from one of our contributors on his advice for the newly diagnosed: https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/.
I hope you find this helpful! Please keep us updated with how things go and don't hesitate to reach out to us anytime!
Christina, MultipleSclerosis.net Team
March 21, 2017
I have SPMS and a rare blood disorder called polycythemia Vera. I just recently had to start using a power wheelchair full time. I still like to work when I can at my husband’s real estate company. I used to teach but couldn’t anymore. My husband is my very best friend and is very supportive! We have 9 children between us (yours,mine, and ours)! Our youngest is 14. I live in Massachusetts and need to find a new MS specialist. I also like to cook and I’m trying to find a power wheelchair that will raise me into an upright position. Do you or anyone out there have a recommendation for either a god MS specialist in my area and/or a power wheelchair that can stand so I can resume cooking for my family? I know it’s a tall order, but I’d appreciate the feedback! Thanks
March 22, 2017
Hi Elysejoy and than you for your questions! I am so glad you have a supportive and understanding husband. As far as finding a specialist in your area, my go-to resource is the National Multiple Sclerosis Society (NMSS) You can use their web search or call and speak with an MS Navigator -- http://www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider/Partners-in-MS-Care or http://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator.
Finding the best wheelchair for your needs is a highly subjective activity, but I do hope you get some input from our community members about their personal preferences. Again, I like to go to the NMSS to find resources and suggestions. Here is some information about finding the best adaptive devices for your needs --
http://www.nationalmssociety.org/Living-Well-With-MS/Mobility-and-Accessibility/Living-with-Assistive-Devices and http://www.nationalmssociety.org/Living-Well-With-MS/Mobility-and-Accessibility. I did notice that some of the links on the second link I provided do not appear to be working, so just be aware of that.
I am glad you are able to keep cooking and I hope you find the right chair to help you continue to do so! Thank you so much for reaching out and please let us know if you have anymore questions. We are happy to help in any way we can! Best, Erin, MultipleSclerosis.net Team Member.
November 30, 2017
I was dx'd in 1988 while on active duty in the USAF and luckily worked with some wonderful MDs who recommended a medical retirement assuring I'd get VA disability and VA care. I've been happy with my VA care until now. I'd rather pay to see a civilian neuro guy than continue with a burnt out doctor. So, here I go! whatcha got for me Rhode Island?