Symptoms-no brain lesions-no diagnosis
Hello all! I’m new here. I’m not even sure if I should be here as I have not been diagnosed but I have researched so much on my own and thought who better to get advice from than the people experiencing this…
It all started, I believe, about 8 years ago. I began having headaches, nearly constant, eye pain/dry eyes and blurry vision. Then body pain. Sometimes quite debilitating pain.
I was diagnosed with fibromyalgia but after about two years I started getting pins and needles in my hands and feet and my legs felt “heavy”.
Sometimes arms as well.
Finally got an MRI because I began I began having electric shock feeling pain when I moved my head.
But no lesions were found. Doc just said no MS. No other tests were done.
This past year has been the worst. I spent sept-dec, with extreme pain, tinnitus, balance issues(fell down the stairs twice) dizziness, numbness/tingling hands and feet, head pressure and could not move my neck for the pain it would cause. The fatigue was awful.
A lot of this is better now, months later, but I truly believe this is what the issue is as over the past 7/8 years all of these symptoms have progressively gotten worse and lasted longer than a “fibro flare”.
I know they are so similar however so I’m just lost as to what to do.
Anxious about all of that coming back as I felt very alone because no one can SEE it and the doc just goes by what she sees, which is nothing on a scan.
Hope everyone is feeling well today!
I’m happy I can type this because I’ve adjusted to not being able to feel the tips of my fingers very well 😀
Hi @JustBuzzing! Welcome to the community! We have lots of members who are undiagnosed and looking for support and information here, so please know you are more than welcome. i can imagine you are frustrated, knowing your symptoms go beyond fibromyalgia, but getting no answers. We have heard from several members who were diagnosed with fibromyalgia, and then diagnosed with MS years later. It is possible you have lesions that are still too small to see. Have you considered getting a second opinion from and MS specialist? The National MS Society has a tool for finding one in your area. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. There are also many other health conditions that mimic MS that should be ruled out. Here is an article that explores them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. I hope this helps and that you get answers and relief soon. Thinking of you. - Lori (Team Member)
oh and they did an X-ray and a cat scan to check for cervical spondylitis (?) also checked for lupus, Lyme, and some other things. Everything came back normal/negative. I hear you, @JustBuzzing. I live in a rural area as well and our doctor's office is 45 minutes away. For specialists, we have to travel 1 to 2 hours. Keep us posted if you feel comfortable doing so. - Lori (Team Member)
I have no brain lesions that can be seen but my spinal cord is Swiss cheese. There are various types of MS. I recommend finding a neurologist who is familiar with the various forms and getting a second opinion thank you for telling me! I did read somewhere about the spine as well and that a spinal tap may be the better route to make sure. Would not look forward to that 😣
I live in a rural town so getting a second opinion could prove difficult as getting the first one took years
Oh I am so sorry. Maybe try the first doctor and ask for an MRI of the spine and neck. Get it done in parts if you can doing the brain neck thorax and lumbar all at once takes about 5 hours I was never claustrophobic before I am now
I know there are other things that can cause these symptoms. Are you confident in your doctor that all possibilities will be considered? Is there any posibility you could have Lyme Disease. I have MS and Lyme and it's sometimes hard to know where to pin the blame for my symptoms.
