After my insurance decided they were not going to cover my thoracic and cervical spine MRI that my neurologist ordered (it was cancelled), I had kind of lost hope on getting answers.
But I sent the Dr. a fairly long and detailed email explaining some of my symptoms we had not talked about much and I told him how I have tried very hard to push through everything and do things in spite of how I feel.
I wanted him to know I'm not a drama queen or hypochondriac I guess.
He met me and my boyfriend last Saturday for an appointment and it turns out he had other tests in mind (lumbar puncture, evoked potentials, sleep study) that he was going to order even if I had the spine MRI. All of those things are now scheduled over the next couple of weeks.
He also talked about the lesions on my brain MRI (he had counted 13 of them) and although they have not changed and are not in the typical areas for MS, it is an abnormal number of them for a woman my age. A few would be considered ok but not as many as I have.
I *might* have issues stemming from head trauma as a child but that would not be the cause of multiple lesions. And it also would probably not cause new symptoms to pop up decades after being hit on the head.
So....
I feel somewhat relieved that I'm not being thought of as crazy. He does think I most likely have a demylinating disease and it seems to be relapse-remitting. He mentioned MS several times during the visit but didn't exactly say I have it. He did say that "if it is MS it will eventually rear it's ugly head" ..so if it's not caught and diagnosed with these tests we'll just have to keep watching and waiting.
On the other hand, I'm surprised now to find myself second guessing things even though I felt relieved at first. Part of me has gone back to wondering if this is all psychosomatic. I think I feel a little bit of fear now which I didn't have before - when I was mostly just frustrated and wanting answers.
But I sent the Dr. a fairly long and detailed email explaining some of my symptoms we had not talked about much and I told him how I have tried very hard to push through everything and do things in spite of how I feel.
I wanted him to know I'm not a drama queen or hypochondriac I guess.
He met me and my boyfriend last Saturday for an appointment and it turns out he had other tests in mind (lumbar puncture, evoked potentials, sleep study) that he was going to order even if I had the spine MRI. All of those things are now scheduled over the next couple of weeks.
He also talked about the lesions on my brain MRI (he had counted 13 of them) and although they have not changed and are not in the typical areas for MS, it is an abnormal number of them for a woman my age. A few would be considered ok but not as many as I have.
I *might* have issues stemming from head trauma as a child but that would not be the cause of multiple lesions. And it also would probably not cause new symptoms to pop up decades after being hit on the head.
So....
I feel somewhat relieved that I'm not being thought of as crazy. He does think I most likely have a demylinating disease and it seems to be relapse-remitting. He mentioned MS several times during the visit but didn't exactly say I have it. He did say that "if it is MS it will eventually rear it's ugly head" ..so if it's not caught and diagnosed with these tests we'll just have to keep watching and waiting.
On the other hand, I'm surprised now to find myself second guessing things even though I felt relieved at first. Part of me has gone back to wondering if this is all psychosomatic. I think I feel a little bit of fear now which I didn't have before - when I was mostly just frustrated and wanting answers.
Comment