All the Symptoms of MS but No Clear Diagnosis!
My fiance is a 38 year old male. He's been battling what he has thought to be M.S. for the past 7+ years. He was diagnosed after training for a marathon and realized something was not right with his body. After 3-7 months of seeing specialists - from a cardiologist to a rheumatologist, and several neurologists – the MRI showed 2 lesions. He was told that he has M.S. He went into denial and really did not expect it to take over his life.
Symptoms started progressing
Now fast forward to 2020, he started to realize that a lot of his symptoms were worsening around September. Decided to see our primary physician to get checked. He was then referred over to a neurologist who "specializes" in M.S. In early October and then mid-November, she did her checks and didn't disclose anything to him or the primary. Time passed and it was December 31, 2020. We all have not heard back from the neurologist yet and then it hit. He started complaining about tunnel vision, blurry vision, double vision, and vertigo. His mobility started to go as well because he was stumbling into things and then he was having issues speaking.
MRI scans showed differing results
So we took him to the hospital, and they sent him back home after realizing he has MS - sad but true! Shortly after I decided to contact our primary since our neurologist would not answer any of my calls for him. However, I went into the office to get his medical documents from her office and boy were there a lot of misinformation/lack of communication from the neurologist to us. When I was able to talk to her she stated that she doesn't know what is going on with my fiance. Here is where we are having major issues. One MRI (hospital) stated that there are no lesions and then a separate MRI (flare and I. her office building) stated 16 lesions!! These were done approximately 4 days from each other.
Optic neuritis was confirmed
I decided to contact our primary to help us out with this because this has been a disaster. We provided him with a number of the documents in the findings and right away said let's get him to see an ophthalmologist and then we will get him another neurologist. The ophthalmologist took him in right away and confirmed that he has optic neuritis but also needed to see an opto-neurologist. Things started to move forward and he was able to get an appointment fast. She confirmed with us that he does have optic neuritis as well and his eye pressure was extremely high. She as well as the primary and ophthalmologist were communicating with him and each other.
More MRIs and a spinal tap
We were able to get a new neurologist and seen pretty quickly. Started to see the light at the end of the tunnel but then during our visit. Our new neurologist brought up NMO as the culprit but needed more tests done. While my fiance's vision still has not returned, we had to redo everything from the previous neurologist because of the inconsistencies of the report from the neurologist. After doing another MRI and tests his MRI scan came out normal and he doesn't have NMO. We are waiting to do a spinal tap as he is currently getting worse by the day and the IV steroids just seem to keep it stable for the time being.
Anyone else have these issues during the diagnostic process?
Has anyone else gone through this type of negligence/misinformation through their journey? How is it possible that 2 MRIs show lesions and the other two do not? Lastly, has anyone been diagnosed with M.S. given all the symptoms that he has like (pins/needles, numbness, tingling, electrical shocks, dullness, fatigue, loss of vision, loss of mobility joint pain, and optic neuritis) but then have negative results in both MRI and spinal tap? If so, what did you do to get confirmation?
How well do people around you understand MS?