I first developed classic MS symptoms about nine years ago. It began with extreme fatigue, very foggy thinking, muscle weakness in my right leg, muscle tightness in neck and shoulders, trouble with stuttering or slurred speech, and a weird itch in my right shoulder blade that never goes away. This first episode lasted for six to eight weeks. Doctors couldn't figure out what was wrong, but it went away and I thought I was over it. Then several months later it hit again. This time I was referred to a neurologist, but my MRI was negative.
Over the past nine years I have learned to manage my symptoms, but there is less relapsing-remitting. It's always with me now, but if I manage stress and fatigue I do pretty well. I've had two more MRIs, but they always come out negative for MS lesions. The last MRI in 2008 showed lesions, but the doctor said they were not MS lesions. I've given up gong to the doctor for this issue.
When I catch a cold, that usually brings on more severe symptoms as well. While stress can bring on more severe symptoms, it is not always the case. In fact, my first episode occurred during my summer break when I had no stress at all, but had just gotten over a summer cold.
My question is could I have MS without a positive MRI or is something else causing this? I'm managing it alright now, but I wonder if there is something I can do to prevent this from getting worse or what I can expect to happen as time goes on. Is this a common problem?
I think it could be MS without a positive MRI. Back in 2000, I went to the hospital with symptoms of fatigue and numbness in my hands. The MRI didn't show anything wrong. Like you, the doctors couldn't figure what was wrong.
Several years passed. In 2007, A doctor suggested I go to a neurologist. I went to the neurologist and had another MRI done. This time, it was determined that I do have MS. The Neuro told me that not all MRI machines are created equal. Some are better than others in detecting things. Maybe, the MRI used on you was not of a high quality.
MS can be a tricky thing. It took 15 years to get a diagnosis for me. I had all the classic symptoms and the neurologist said, "I am sure it is MS but you don't turn enough tests "- even though I had the relapsing-remitting, trouble in fall and early spring, trouble when sick... The first neuro I had only did the MRI of my brain ( I must admit MRI were quite new on the scene in 1991 ) several times over the years and it did not show lesions.-When I had a more severe attack in 2006 and decided I was not going back to the same neuro, I switched drs. The new doc did and MRI of my brain, neck and spine and it showed all my damage was happening in the spine and had been missed all these years.( and at that time I had 2 vertebrae that were glowing on the MRI! ) I do not turn the CSF either.My doc sent me to the Mayo clinic to a MS specialist and I was finally diagnosed after 15 years of wondering. Life goes on and you learn to adapt but there is something unsettling about not having the actual diagnosis. As time goes on ( 22 years now ) fatigue is more of an issue and my type A personality is really having to learn to pace myself. Hang in there.
Thank you for responding to my post. It is somehow comforting to know that someone else has gone through years of not knowing, and then finally received a diagnosis. I live on the West Coast, so I'm thinking of getting a referral to the UCLA MS clinic. I also have a Type A personality and have already radically changed my life. But still I find I tend to try to do more until I get sick or have a relapse and must deal with it. Take care.
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