Welcome! I’m so sorry to hear about your health problems and your long battle for diagnosis, and hope that your next neuro will be able to give you some answers. While I’m not sure the specifics of your situation, I do know that MS can be diagnosed without lesions on the spinal cord, however there are many different things that can cause lesions besides MS. What did the second neuro attribute the new lesions on your second MRI to? The fact that it showed new lesions does sound pretty suspicious of some sort of disease activity along with all of your symptoms. Hopefully the new neuro will take this very seriously. Have you had any additional testing for MS such as a spinal tap or evoked potentials?
I also went through several neuros, one of whom was really, really rude and totally dismissive. One thing that I’ve found helps tremendously is to take someone with me to an appointment. I know this sounds funny, and I feel like I’m a big girl now and can handle a doctor’s appointment by myself (lol), but for some reason having a second person in the room really changes the whole dynamic. The two times I have done this the docs were way less dismissive, I got a more thorough exam, and my docs actually sat there and took the time to answer questions.
I did this once with my old pcp who was generally quite dismissive, and it was the one occasion when he was really nice. The second time I took a friend to my first visit with my current neuro, and the neuro spent around 90 minutes with me….yes, I did say 90 whole and entire minutes (the nurse finally pulled him away, lol). My friend was extremely familiar with my symptoms and history mentioned all sorts of stuff I would have totally left out, and she really stepped up and grilled him (I honestly tend to kind of freeze with a glazed expression on my face and not say much when I get to the docs). Anyway, while she was grilling him, I played the polite, submissive patient, and that combo seemed to really work. The neuro was not only helpful, he was actually friendly and chatty. Go figure.
Anyway, I don’t know if any of the above will help, but best of luck with your new neuro, and please do let us know how everything turns out for you.
5 years is a long time!!! You need some answers. I am sorry you have been so ill and that you have gotten no answers. Please try to find an neurologist who specializes in MS. At least find one with lots of experience with MS. Good luck and keep us posted. This is a great place for answers and support. Welcome!
Love and prayers,
I can sympathize with all you are going through. I have gait problems, and use a cane as my left leg drags. My balance is terrible and I have falls too. A year and a half ago I fell and broke my wrist. It was a bad break and I needed surgery. I try to be very careful now and avoid ice and even wet surfaces. I have the debilitating fatigue and I had the muscle tics too.
I was dx with MS 7 years ago but 2 years ago with lyme Disease. My Drs think it is a possibility that I have had Lyme disease all along which has caused neuro damage, and maybe MS. I am just suggesting to check out lyme disease. Most people don't know how debilitating this disease can be to the central nervous system. I did not until recently and have met people who are handicapped by this disease. The symptoms are similar to MS, and even lessions on an MRI can be caused by Lyme. If you check it out see a Lyme literate lyme Dr. You can ask on the lyme board here for a reccommendation for a Dr in your area.
I am slowly getting better with treatment but it will take a long time cause I've been sick so long.
Best of luck. I hope you get some answers soon.
I am so sorry about your diagnosis, but hope that now that you have a good neuro you will be able to receive the proper treatment. I can only imagine that you must be going through a wide range of emotions right now, especially after all those years of being so sick with no answers and….questionable medical care. Please know that we are here for you, whether you have questions, need support, or just want to vent.