Info please

Hi Angel eyes! I just wanted to let you know that your question is receiving lots of comments over on our Facebook page, where I'm one of the moderators. Here's the link to our page: https://www.facebook.com/MultipleSclerosisDotNet
Please come on over and check out the comments. One piece of advice the group had for you is to consult a doctor who is a Multiple Sclerosis specialist. The National Multiple Sclerosis Society offers a link with a tool to find an MS neurologist near you: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources


And I'd like to invite you over to the Facebook group! While you're waiting to find out what exactly is going on, there are plenty of articles, information, and aa great bunch of people over there who would love to keep you company as you find out what's going on. It can be scary and lonely as you're waiting for any diagnosis, but with a hard to diagnose disease, all of us have been somewhere in the diagnostic process at one time or another. I've had MS for forty three years, and I learn something new on the page every single day. Come hang out with us! We would love to have you and keep you company.


In solidarity, Therry, a Team Member

Hi . I am glad your question is getting so much attention in our Facebook community. We do have community members who went undiagnosed for years, despite having symptoms, because their MRIs were clear. They were diagnosed later when lesions became visible on MRIs. Some researchers and doctors theorize that lesions can be too small to see with MRIs initially, but might still cause MS symptoms. That could be what is happening with you. Unfortunately, you are unlikely to get a diagnosis until the lesions appear. Have any of the neurologists suggested repeating MRIs in a year or so if symptoms worsen? There are also several other health conditions that mimic MS and should be ruled out. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. I hope this helps and then you get some answers and relief. Thinking of you. - Lori (Team Member)

Hi! I was recently diagnosed in March 2021. Definitely a MS Neurologist. Not to be discouraging but it took 10 years for my diagnosis. Typically you have to rule out Lyme Disease and some other conditions. A full work-up with literally everything tested… immunoglobins, all vitamin levels, inflammatory markers, wearing splints for a certain amount of time to see of that helps, and a full medical history of both you and your family. I had uveitis, low back pain causing my leg to give out, fatigue, and joint pain. After passing out 3 times causing a TBI I had cardiac testing which was normal. I then decided to seek out a neurologist who sent me to a MS specialist then imaging was finally done and I had active lesions. You definitely have to be your own advocate. With alot of medical professionals I find its better if you ask them “so is this possible because of this and/or can we try something like this” It is a long road sometimes but the best thing is to find a doctor who listens to you, keep a symptom journal, and take pictures or videos of your bad days. Good Luck!!

I echo everything everyone has said, and assure you that you are not alone and that we all take you seriously. Like @sissycat said, finding a neurologist that is an MS Specialist is the key person to see and you will soon learn from others here how so many of us waited a long time to get our diagnosis. I can suggest two things while you are on your steep and scary learning curve: 1. Keep a journal of your symptoms--type, location, duration, intensity... It will be helpful to both you and your neurologist going forward 2. Until you finally get your diagnosis, don't freak yourself out about not being on a treatment plan yet. An MS diagnosis is usually able to be made rather quickly nowadays as compared to the past; if does take a long time and you are primarily experiencing mild sensory symptoms, your own case may not be very active at this point. Best wishes, Debbie (Team Member)