Tuesday, March 8, 2011
MRI done right, read wrong
I saw a post on a site today regarding someone's MRI not showing the normal spots of MS. I wanted to reply to the question but was unable to, so I decided to write about it here for anyone that is interested. When I had my first MRI, it was read as normal, no abnormalities. One week later another MRI was done and three spots were found. I had it done at the same location so I asked "how can that be, in one week I have three spots." I demanded an explanation and sat with the radiologist who compared both MRI's with me. I even saw for myself, they weren't on the first one but they were there a week later. He fiddled with some buttons to darken the picture of the first MRI and OOPS..... there were the spots. I obviously advised that I was not paying for a 2nd MRI when the 1st was their fault. Anyway, the radiologist and the doctor that ordered the 2nd MRI did tell me that it was possibly MS. I had no idea what MS was at that point and luckily managed to get an appointment with the MAYO CLINIC within the first month of being told that it could be MS. Obviously, as soon as I found out (and before my MAYO CLINIC visit) I went right to the internet and did my research as to what MS was. I find a very helpful site that had a chart listing all the symptoms which I printed off and went through line by line. Out of the 10 most popular symptoms, I had 9 of them. So I was all prepared for my trip to Mayo. I had both sets of MRI's, all my medical records from the past 20 years (long story as to why I had them, but I did) and my chart showing that I had 9/10 symptoms. The doctor met with my husband and I for a long time and seemed very nice. He did the tests that I've found all neurologists do when testing for MS, reviewed my chart showing which symptoms I knew of and then he looked at the MRIs. After looking at them he opined that it was not MS. The lesions on my brain were not consistent with MS. He did admit that I had a lot of the symptoms (deafness, vertigo, memory loss, balance issues, forgetfulness etc..) but told me again it was not MS but would send the MRI's to the radiologist on staff to review. When I got the report from them a couple of weeks later, he again opined that it was not MS. OK so if it wasn't MS what the hell was it. Now I find a local neurologist who I disliked from the first time I met him. His only concern was who was paying for the two sets of MRI's. He couldn't understand any insurance company paying for them. I told him that was not my concern and I wanted to know what I did have. He said it would take a few months to find out what I had because he would need to do a lot of tests. Needless to say, I left his office knowing I was not going back. I went back to my regular GP who provided me another name of a neurologist (the biggest in the area) and I made an appointment to see him. Of course at the first appointment, he was very kind and friendly, doing all the same physical exams I'd had at MAYO, reviewed the MRIs and he also said, you don't have MS. Even though you have many of the symptoms of MS, this MRI is not in line with other MRI's. After I saw him a few times he told me there was nothing he could do for me (he would not order a lumbar puncture even though I asked). He referred me to an infectious disease doctor to try to find out what was wrong with me. Long story short, the infectious disease doctor did his usual tests and DID order a lumbar puncture. After the results came back, he told me I was all clear as far as any infectious diseases and really need to go back to the neurologist but wouldn't tell me why. So, again I made an appointment for the neurologist, taking my blood work with me and he reviewed the part about the ocinological bands (there were 10 or 12) and he said, oh, you have MS. Just like that. I got pretty angry at that point and I'd had it with this doctor, no apology, nothing. I said, so what does that mean and his reply was in doctor language. Due to me being angry I asked him to tell me in plain English what could happen to me... his comment: You may never walk again. I burst into tears (I was in his office by myself, no family member with me). He went right on to start talking about treatment plans but my mind was not there, I just wanted to get out of his office. So from the first diagnosis from the radiologist to the neurologist's diagnosis after a lumbar puncture, was four months. I guess MRI's don't lie, it's just the person reading it. So, if the person that asked the original question about her doctor saying her MRI does not look like MS, keep going.... you know the answers.