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Possible MS with normal MRI

Recently I was seen by a neuro and had a normal MRI. I have had many MS symptoms off and on for almost 20 yrs. ANA and Sed rate neg. so no auto immune disorder.  Neuro now wants to send me to a "big center" (meaning a MS specialist at a big university hospital.  I am unsure of why and he is not really giving me answers to this. Could he feel I definitely have MS even though neg MRI? He has not done evoked potentials or spinal tap yet.
I had a MS work up 20 yr ago and was told I needed repeat studies but never went back.
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I had a spinal tap a number of years ago to be certain of my diagnosis of MS. The test came back negative, so the Dr said that I don’t have MS. I’ve since seen a different Dr. who gave me a diagnosis of MS. While he showed me the MRI he noted all the white lesions on my brain. I outright asked him if my lesions were considered “a lot”. He then answered “yes”. After the previous Dr experience, I asked because I wanted to ne certain that I had MS. In other words, I don’t believe that anybody with MS is positive for every symptom there is.
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987762 tn?1331027953
Hi and welcome,

I'm really not sure how to answer your question about your neurologists feeling....

There honestly isn't enough diagnostic information provided for anyone to consider 'yes' as an answer to your question "Could he feel I definitely have MS even though neg MRI?"

Based on the minute diagnostic information you've provided, as in normal MRI 20 yr's after your first MS work up, the logical answer would have to be 'no' because it wouldn't make diagnostic sense for a neurologist to even put a neurological condition like MS on your potential causes list if there isn't any MS consistent or suggestive diagnostic evidence.....It's just way too big a leap to assume your neurologist could have any thoughts that you "definitely" have MS despite a normal MRI.

There would need to be a rational in your neuro referring you to a big hospital eg availability of specific tests, more experienced or specialist neurologists ie neuro-psychologist, neuro-ophthalmologists etc etc despite your normal MRI. Do you know if you have any abnormal neurological clinical signs eg clonus, neurogenic bladder and or bowel, Optic Neuritis (ON), Charcot triad (dysarthria, nystagmus, and intention tremor) etc etc etc?

Hope that helps......JJ

Helpful - 0
I have had numbness/tingling in my face and extremities, what he referred to as HS Hug, concentration and memory issues. some  incontinence, headaches, heat intolerance, muscle cramping/spasms/weakness , unstable gait/balance issues.  Have never been given a definite diagnosis on any symptoms I have had.
My first visit with this neuro he simply did an exam and asked my symptoms.  He ordered an MRI of the brain and c spine.  Did labs also.  There is availability in our area for other tests as I have looked into it since.  The first neuro I saw 20 yrs ago moved away but he felt it was highly likely I had MS at that time but had to follow up to meeting diagnostic guidelines for MS. I was young (20's)and did not follow up with anyone after he left town. He has ruled out many of the issues that mimic MS but I did have a normal MRI then as well.   Over the years, I felt like it was probably not MS as I was not real familiar with the disease and had times when I felt normal and then would have bad "spells".  After more frequent symptoms, I saw someone just over a year ago who immediately told me I needed to see a neuro again to r/o MS.  I have waited a year to be seen and then felt like the visit was pointless as he has not communicated well at all what his thoughts are. I have been waiting now for a week for a call back to try and figure out why he wants to refer me on.
When they told me my MRI was normal I was relieved then I'm told I am being sent to a big center.  I would like to know what's causing my symptoms and am open for whatever I need to do.

The 'MS Hug' is basically a banding feeling that is either partially or fully going around your torso, and it's associated with spinal cord lesion(s) affecting the intercostal muscles between your ribs and causing intercostal muscle spasms.

The intercostal muscles are suppose to expand and contract with movement of the skeletal frame and breathing but the signal going through your spinal column gets interrupted by the spinal cord lesion(s) so instead of these muscles expanding and contracting they can get stuck in the contracted stage and make it feel like there's a restrictive band to a boar constrictor wound around your rib cage.

The Hug descriptions vary from one extreme to the other, experiencing anything from being uncomfortable eg feels like your wearing a bra that's too tight, to the most intense pain imaginable eg pain like a major heart attack, waves of intense pain like childbirth and how long it lasts for is equally varied.

Prior to my worst experience, i'd been experiencing the occasional sharp stab of pain in the one spot in my left rib cage, painful enough to get my attention but nothing mind boggling painful that didn't stop. My worst experience with my intercostal muscles was when the entire left side of my rib cage contracted and didn't release for more than a few seconds at a time, the pain was so intense i couldn't stop my self from screaming for the first few hours, it lasted 3 days. I've had it last longer though thankfully nothing (knock on wood) has ever been as painful....

IF your neuro has a problem communicating with you that isn't going to be helpful to you even if you are never diagnosed with something that requires treatment......today patients are more knowledgeable about their medical condition(s) than ever before, just connecting with others is both supportive and educational but trusting and having confidence in your neurologist is seriously important to your physical and mental health!

Others in similar situations with an uncommunicative neurologist have found getting copies of their test results and neuro file etc so they can keep all their medical records together, take to a second opinion, read for themselves etc more informative and helpful to their peace of mind of whats going on, so it might be something you might want to consider doing if your neuro isn't telling you anything you want to know.

Hope that helps.......JJ
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