Possible MS - Clear MRI's

[gemmcc]

Hello Everyone,

I've had symptoms of possible MS since 2007, but have always had clear MRI's. My previous symptoms included Optic Neuritis 2007 confirmed via OCT scan 2008 which showed optic nerve lesion on right side, facial numbness 2007, seizure like activity eeg 2007, fatigue, pain/numbness/tingling in hands/arms, episode of banding pain in upper abdoment/chest, lumbar puncture 2008 elevated myelin basic protein.  Recently I've developed hand tremors and balance issues.

I was seeing a neurologist at shands neuroscience institute in jacksonville, but moved out to texas in 2010.  The neurologist I was seeing here I've been able to get an appt  Saw a PA in the office who was very irritating.  Been unable to speak to the nuerologist about the MRIs the PA ordered.  I had my primary care doctor refer me to someone else.  I had an appointment yesterday with the neurophysiologist yesterday and I have emgs scheduled for next week.  She believes the tremors are essential and not related to MS.  In my appointment with her she stated that she needed to review all my medical records, but she doesn't believe I have active MS so medicine is not appropriate.  She also said that unfortunately we may not be able to obtain any answers.  

I've requested an appointment at UT southwestern medical center, and am scheduled to see a neurologist there in January.  My question is what is the typical course of action for MS treatment.  Do you only take medicine when you are experiencing a flare?  Can essential tremors be a result of MS?  Would my new balance issues not be an indication of active MS?  How likely is it that this is MS when my MRIs have been clear over the past 4 years.  I really just want a doctor to take the time and figure out if it is MS or not?  There is definitely something going on which has been shown clinically.

Thanks for the help!

[JoJoGranny]

Thank God I found you!  You are the first person I have found that has "seizure-like activity." I have almost every other symptom of MS, but my neuro sent me to a psychiatrist saying that the seizures were non-epileptic and psychological in nature.  I have absolutely NO history of psychological problems, depression, panic attacks, etc.  I grew up in a healthy and happy home, have been married 30 years with four happy and healthy children.  I have never suffered any horrible trauma (sexual abuse is what they say causes non-epileptic seizures). I have been from one specialist to the other, including a neuroolgist who specializes in -epilepsy, an endocrinologist, a gynecologist, a cardiologist, and a psychiatrist. As soon as they hear the neurologist's diagnosis of conversion disorder, they stop listening.  Apparently those with conversion disorders want to be sick.  No one has yet to mention MS.  Basically, I have had to diagnose myself through over a year's worth of research.  I have an appointment with an MS specialist day after tomorrow, but I hesitate to even mention the seizures for fear she too will go with the conversion disorder diagnosis and send me back to the psychiatrist who throws horrible drugs my way that either turn me into a zombie or a hyperactive lunatic.  Have you found others who have these seizures and also MS?  You have given me a glimmer of hope, and for that I am so grateful!

[jensequitur]

I think you'll have a good experience at UTSW.  I see Dr. Courtney.  My first OCT was at her office - they've done some research on atrophy of the optic nerve and its relationship to MS.

Just be sure to bring all your tests!  If you've never had a 3T MRI, they might schedule you for one.  

[anon07072023]

I'm glad that you made an appt with a neuro at UT Southwestern Medical Center. I hope they can point you in the right direction.  Make sure your appt is with a neuro that's an MS specialist.
You're right, something is definitely going on.  

I would stay clear of a doctor that tells you that they don't believe that you have ACTIVE MS, so medicine is not appropriate.  If you do have MS, it always seems to be active.  That's like saying that it's benign MS, which in actuality, no one really knows that they have until they've lived many many yrs with the disease.  And from your symptoms, yours hardly sounds to be "inactive."

Even for those with clinically isolated syndrome (CIS), disease modifying drugs (DMDs) are recommended. Those with relapsing-remitting MS take these DMDs to reduce the amount of future disability.  
Did you just have brain MRIs, or did you also have spinal MRIS? Even if you did have spinal MRIs, the lesions in the spine are pretty difficult to see.

Take Care,
Kelly