Hoping to get some help from the community

Hi, !

I am sorry you are experiencing these symptoms but still don't have a diagnosis at this time. I know it's frustrating to be dealing with a variety of health issues, including pain, and not have a singular cause to point to. I do hope you are able to schedule that brain MRI, as it can help rule out or diagnose MS. If you are interested in reading about the various tests a doctor may use to diagnose MS, you can check out this -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis .

And, when it comes to dealing with symptoms and having no diagnosis, well, you are in good company here. In fact, we have had so many people come here and post about all these mystery symptoms they are dealing with and lamenting the fact that they have no diagnosis, that one of our patient leaders wrote an article specifically for them -- https://multiplesclerosis.net/living-with-ms/diagnosing-isnt-easy-why. Diagnosing MS can be a bit challenging and you need a doctor who will partner with you to get to the bottom of your health issues. Pain, especially, can be a very exhausting and unrelenting symptom. Is your doctor at least trying to treat some of the symptoms you are experiencing, like pain? I sure hope so!

The symptoms you are experiencing could be MS related or related to another condition and, honestly, only your doctor can diagnose you.

Again, I hope you get that MRI and that you are able to get a proper diagnosis (whether it's MS or something else) AND a treatment plan!

Best, Erin, Team Member.

I'm so very sorry for what you are going through. There's nothing more frustrating (and scary) than to be experiencing what are seemingly disassociated symptoms for which no one seems to have any answers. I agree with Erin, it's important to get a neurologist who specializes in M.S., and will work with you in your journey.

I'd like to tell you a little about my (similar) experiences leading up to my diagnosis. I offer this that you might relate to some of what I experienced, and to demonstrate how so many of us with M.S. had difficult diagnoses. Please keep in mind, everyone's journey is different and my observations are solely based on my own experience.

Lhermitte's Syndrome was one of my very early symptoms, lasting for a few years, in my early 40's. I noticed areas of parathesia in my legs but none were specifically problematic in the beginning. And there wasn't any real pain with it. The trouble I had with walking, when it began, was due to progressive leg weakness and some lack of motor skills (I tripped a lot). Then, one day, there was a very disturbing sensation of nerve activity up and down my legs, while I was driving to work. When I arrived I was unable to get out of my car because I couldn't move my legs at all. MRI's were done on my brain and neck, neither of which showed any significant lesions. They found a significant amount of lesions in the thoracic area of my back. The M.S. hug didn't begin until a few years after my diagnosis and continues today.

My whole journey, began (with the Lhermitte's Syndrome) in the Fall of 1996, to my first major exacerbation in December, 1997, to my ultimate diagnosis in April, 2000. And all this happened, after my doctor had RULED OUT M.S., 5 YEARS EARLIER after doing a brain MRI. She did the MRI because of my concerns about the early symptoms (described above) peeking through occasionally and because my mother was living with M.S.

It's important that you know, that while all this was happening, I continued to enjoy my usual activities and life was (otherwise) wonderful. We, my husband, 2 children and I, traveled each summer for 3-week vacations up North to the lake and a week of skiing each winter. I bowled in a league and played bingo on a regular basis. Lots of extended family picnics at a local lake and holiday celebrations throughout the year. And winter fun in our backyard building snowmen with my grand daughter are some of my fondest memories. I'll celebrate my 72nd birthday this year.

Hang in there while the medical people do their job and you keep doing your's, living!!!

God bless you! *✞¯`*•.¸¸.•*
Mara