A question for those who have Multiple Sclerosis or Devic’s Disease?
rubixcube
I went to the doctor today, and the doctor told me that I either have MS, or its cousin, Devic’s disease. They had to send the tests to Mayo Clinc so I will not find out for another month.
They are having a hard time diagnosing me because I have lesions on my spine, but not in my brain. He said the lesions I do have are very old, and I do not have any new ones. Has anyone else with MS ever had lesions on their spine but none in their brain? Has anyone else ever had a hard time being diagnosed- or told they didn’t have it then years later told they did. I understand MS is hard to diagnose and Devic’s is a rare disease. I just got so much info at the Doc’s office today and don’t know what to think. Thanks in advance.
I don’t have MS, but my mom does. She had lesions on her brain and spine when she was diagnosed, and she had other symptoms indicative of MS (optic neuritis, numbness, motor deficiency, etc).
However, fifteen years before her MS diagnosis (which I believe would be twenty-three years ago), she was told by a doctor that she didn’t have MS. I’m not sure what her symptoms were at that time, but apparently they were not numerous or prevalent enough to warrant an MS diagnosis. Eight years ago, when she was having trouble walking, she went back to the doctor and got diagnosed with MS.
MS is one of those diseases that is tough to diagnose in the early stages. Treatment for MS is pretty rough, so doctor’s don’t like to offer the treatment until they are sure that the patient has MS….and by then, the patient has quite a few problems. Even so, it would be more harmful to mistakenly treat a patient who doen’t really have MS.
I’ve never heard of Devic’s, so I can’t help you there.
I’ve said a prayer for you, and I hope everything works out for the best.
It took almost 15 years for me to get a diagnosis of MS. Every time I went to the doctor of hospital I was either labeled a hypochondriac or an ordinary nut case. Finally, I went blind in my left eye, lost the ability to speak and could no longer walk. I was then admitted to the hospital and given an MRI and told that my chances of having MS were in between 50% to 75%. Six months later an MRI showed numerous lesions on my brain. It can take ten years or more to get diagnosed with MS since there is no definitive test for it.
There are many MSers with lesions in their spine but not in their brain. MS can be difficult to diagnose as can Devics.
I run a MS support group on Yahoo and if you are interested please join us! We have a lot of great information in our files that would probably be of help to you. The group is for anyone with MS, those who may have MS, have a loved one with MS or those who have (or may have) a related disease. My group is MSersLife and the link is below. I would welcome you to join!