I have had a variety of symptoms since 07 -in 07/08 I did the round of tests for MS, was told I did not have it, though I did have 2 lesions on my brain. Symptoms went away for a while but came back in the fall of 2011 & have been around since then. The biggest issue is fatigue, which is severe! My body feels heavy and achy and tired and I could sleep all the time.
Other symptoms are pretty minor: tingling in my hands and feet, one episode of numbness in my leg that lasted 2 days, several episodes of the "light halo" around my eyes, headaches (migraines, not so much a problem now that I take Tomapmax).
I had another MRI in 2011, this one with a newer machine. I didn't get much information from the neurologist. Just that it "looked okay." I was frustrated and kind of gave up. Things have continued and I recently met someone from the MS Society...was encouraged to get another opinion and have a neurologist who specialized in MS read my MRI's.
I made an appointment, which was yesterday. The first surprise was that it was with a nurse practictioner, not a neurologist. She took a history, listened to me describe my symptoms. She did a physical exam... the "strength tests", an eye test and evaluated my gait. Then she told me I DO NOT HAVE MS. She told me several times THIS IS NOT MS.
I really want to believe her. But later I couldn't shake this niggling feeling in the back of my mind. She didn't even have a copy of my most recent MRI, had never looked at it. She based her statement on tests from 2007 and 2008. Knowing what I know about MS, does this even make sense? Or maybe the lesions on the MRI from back then are just SO not indicative of MS she can be so positive?? A little input from those with experience with doctors in the field would be appreciated! Thanks!
Hi Kristine - I would not be put off by the fact that you saw a nurse practioner. They are often more helpful than the Docs with whom they work. The clinical exam is a very important part of the MS diagnosis. MRI's, blood tests and LP's are typically used to confirm clinical findings.
You should be able to get a copy of the radiologist's report from your 2011 MRI. It's your brain and it's your report. Don't be afraid of being firm in your request. That said, MS lesions have a distinct appearance and typically appear in specific areas of the brain and c-spine. It sounds like you lesions may be outside of these norms.
If not MS then what? I would ask the neurologist, or the nurse practioner to point you in the right direction.
You would have to have had lesions in your MRI's that indicated they occurred on two different occasions, separating them by time. Finding them on one MRI and then not again would not secure you a Dx of MS. Perhaps your neuro person has looked at the most recent MRI but did not indicate so.
Your neuro has to follow the McDonald Critera to diagnose MS, you can find it by googling it, and it defines what has to be seen. Migraines can also cause lesions as can other problems. It sounds like your tests done in the office came out normal, but as Kyle says, don't be afraid of collecting test results, they are often very helpful if you move. I once had a neuro who shredded his files after 5 yrs and I had to rely on another neuro that had been sent the files in order to get copies of them. You are entitled to ask for a copy of the written dictation of your office visits (often finding errors) and your MRI disc and the radiologist reports.
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