All the Symptoms of MS but No Clear Diagnosis!

By tsai5

3 min read

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?

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Lori Foster Member
Hi @Tsai5. This has obviously been one frustrating journey for you both. I hope you get lots responses from others in the community, but I know you are not alone in getting differing MRI results. Often, when that happens, it has to do with the quality of the MRI machine. It sounds like you are in good hands with this new neurologist. The spinal tap with provide more definitive clues and should lead to a solid diagnosis. If the results are negative, there are several other health conditions to consider that mimic MS. Here is an article that lists them: <a href='https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions' target='_blank'>https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/</a>. I hope this helps and that he gets some answers soon. Please keep us posted if you are comfortable. Best wishes! - Lori (Team Member)
1. tsai5 Member
 Thank you for the reply! It's really frustrating bc he was diagnosed 8 years ago and then when we received another MRI with the flares it shows 13! The nurologist is none responsive and we have heard from many people in our town that it is very difficult to find a good nurologist. Just curious to see if this has happened to others as well.
msswimmer Member
Hi, This was not the case for me, diagnosed very quickly some 20 years ago, though this is a very common story among others in my MS support group. The most important advise I can give you is to see a neuorologist specializing solely in MS. This may be difficult for those that live more remotely, though the travel is worth it, You are worth it! Once he gets a good MS diagnosis your MS neurologist will put him on a MS DMT Disease Modifying Therapy. This should have been done eight years ago. It is also recommended that the MRI they use is a 3T - Three Tesla, this is currently the highest imaging machine available to us at this point. There is a 7T, though it's only being used for research at this time. After he is diagnosed and things settle down he will only need to be traveling to his MS Specialist 2-4 times a year. Regards - Dix <a href='https://www.sierranevadaopenwater4ms.com' target='_blank' rel='noopener noreferrer ugc'>www.sierranevadaopenwater4ms.com</a>
Kim Dolce Moderator & Contributor
Tsai5, I hope I don't confuse the issue further with my thoughts, but here goes. The difference between no lesions and 16 lesions can have more than one cause. Lori and MSSWIMMER mentioned one: the strength of the magnet on the 3T machine picking up more lesions than a 1.5T. (The lower-strength magnet of a 1.5T can miss very small lesions). But MS patients don't always have the option of "choosing" a 3T. For example, the local health systems within a 40-mile radius of my home only use 1.5Ts. 3Ts are more expensive, and that is why 1.5Ts are most common. I have no need for a good neuro can advise him on whether that would be helpful. Another possibility is in the interpretation of the scan. Radiologists "read" the scan and write the actual report, then the neurologist reads it and . It takes a practiced eye to decipher MS lesions from other types, and even an experienced radiologist can be uncertain. Neurologists don't necessarily know how to read an MRI. My neuro admits she can't. A small percentage of MS patients have negative spinal taps. But in many of these cases it can be overlooked if all other diagnostic criteria are met. MS was and still is largely a clinical diagnosis, and newer diagnostic tools such as MRIs aid in making a determination. Multiple sclerosis can be very hard to diagnose, as you have witnessed. Not only with a diagnostic tool such as an MRI or a spinal tap, but also because of the tedious process of eliminating other possibilities such as NMO, diabetes, Lyme, stroke, fibromyalgia, and many others besides that share the same symptoms as MS. I hope a good medical team can get your fiancé's case sorted out, make a diagnosis, and start him on a treatment program. Best of luck to you both.
kitsy Member
I am so sorry that you and your fiance have ridden such a terrible roller coaster with symptoms, testing, doctors and diagnosis. Wow! Many of us with MS have had some of these problems, but usually not all of them. I saw several specialists in cardiology, infectious disease, ophthalmology, neurology, and more. The rheumatologist diagnosed fibromyalgia and prescribed gabapentin which helped with some symptoms. I am grateful for the cardiologist who discovered life-threatening arrhythmia and inserted a pacemaker, but a few years ago that meant no MRI. I had 3 inconclusive spinal taps, so two MS specialists said I didn't have MS. Finally MRI protocol and pacemaker technology advanced so I could have an MRI. I feel very fortunate to have had a local neurologist who stayed with me throughout these 4 years. Under her care I was diagnosed as "probable MS," once she read the MRI results she diagnosed me with MS and I began treatment. The treatment has greatly improved my quality of life. A partial diagnosis can be frustrating, testing that leads nowhere is discouraging, doctors who disagree are maddening, and time without knowing or treatment can be scary. I wish you and your fiance the best and hope there is a diagnosis soon that you and your doctor are confident in.
Laura Kolaczkowski Moderator & Contributor
What a journey it has been for you two so far. Sadly many people go through the same path to diagnosis - years of tests and waiting. I wanted to let you know that perhaps the MRI is not out of the question. The newer implantable cardiac devices (ICD's) are MRI compatible. Please check with your cardiologist and the manufacturer of the ICD. Good luck with the next steps in diagnosis and treatments.
JohnC777 Member
what news now on your fiance? thanks
1. Erin Rush Community Admin
 I think it's lovely that you have asked for an update, <inline-mention username="JohnC777" user-id="4600028"/>! I hope <inline-mention username="tsai5" user-id="3939482"/> sees your comment and comes back and updates us. Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team member.