Seeking answers: Has anyone here been diagnosed with MS despite clear MRI?

United States
June 6, 2009 6:57pm CST
I know from reading material that the damage caused by myelin in MS sufferers is USUALLY visible on an MRI, but I have doctors insisting I have MS symptoms despite a clear MRI and my neurologist is now talking Lumbar Puncture. Is it worth the risk if there is little chance that something would not show up on MRI? Has anyone been through this? I am sick of not knowing . . .
1 person likes this
2 responses
@ALouie (118)
• United States
7 Jun 09
MS is a very difficult disease to diagnose because ms activity is silent. I was diagnosed in 1994, and have been on treatment for over 13 years, with great results. I am not a doctor, but from what I understand, the earlier the disease is treated, the less damage will be done to the body. The risk you take is ultimately up to you, but getting opinions from neurologists that you trust is the best thing that you can do. I was very scared to go on treatment when the neurologist first began to suspect ms. Now that I know that damage could have been minimized, I may have been a bit more eager to start treatment. Nevertheless, because ms is so "under the radar" going on treatment is really like having an insurance policy. You may never get another ms like symptom, you may get minor symptoms, and if you do have it, it may or may not be causing damage. Find a reputable neurologist that you feel comfortable with and work with them. Minimizing the damage ms may be doing to your body is the best action against it that you can possibly take.
• United States
7 Jun 09
Thank you. I very much would like to know for sure. I'm worried about the expense of proceeding based only on "just in case". You know?
@Rollo1 (16689)
• Boston, Massachusetts
7 Jun 09
You didn't say how long you've been having symptoms. If it is fairly early in the progression of the disease, it may be possible to have a nearly normal MRI. Lesions, which are scar tissue on nerves, will show up over time, but all scars take time to form. Everyone has to realize that they have some degree of autonomy, even in medical matters. I was diagnosed more than 2 decades ago when they didn't do a lot for MS, and they didn't do MRIs at that time. When the neurologist suggested a lumbar puncture, I declined because it seemed silly to do an invasive test to prove I had something they couldn't do anything about. 15 years later, when I next saw a doctor, I had an MRI and all the lesions lit up like tiny polka dots all over my brain. Today though, they do have treatment protocols and new medications. You have to decide whether or not you want to start treatment right away if your LP shows MS. It's not the worst thing you can have done. Since you say you are sick of not knowing what's wrong with you, I think you will at least have an answer either way. Peace of mind is worth something. The real question is, do you want to go on not knowing? If you want an answer, you should consider what your doctor suggests.
• United States
7 Jun 09
Thank you! I am about five years into evaluation now. I seemed to be pretty normal 6 years ago. I'm still under 40! Great response. Thank you again!