More thoughts from 2010.
I’m afraid we’d really be outraged if we knew just how many of us are misdiagnosed. I think this happens many times because the doctors aren't paying attention to what we are saying because they think we are just nutsy boltsy with that Fibro stuff. In the case of my neurologist, he doesn’t even pay attention to what other doctors are saying.
My neurologist became my neurologist because he was the doc with the first available appointment when my PCP wanted me to see a neurologist. I was sent to rule out MS, to find out why I can't turn my neck far enough around to come close to touching my chin to my shoulder and to find out what was causing horrendous hip and leg pain. My exam consisted of him looking at me, asking a couple of questions and poking at my hip. This guy sat down, looked at me and said I didn't have MS and he felt sure the pain and not being able to turn my neck was that Fibro stuff. He did order an MRI as a "courtesy" to my PCP but only of my lower back and hips. He wasn't in the room with me 10 minutes and it may have not been that long.
My MRI showed 2 degenerated disk. (Just that Fibro stuff.) Fortunately, that diagnosis meant I got to see a neurosurgeon who is wonderful! He sat down with Bill and I and explained about Fibro and Myofascial pain and how they are different. Then he explained why surgery would be his very last option - he couldn't guarantee he wouldn't make the Fibro worse fixing the back pain. Fortunately the first nerve block worked.
I see a different neurologist for EMG studies for my neuropathy. This doctor noticed that I had to turn my body to look where most people would have just turned their head. He ask me about it and told him it had been going on for a while but the first neurologist I saw had attributed it to my Fibro. He said it was not from the fibro and that we had to find out why it was like that. He also saw my original referral and that I didn't get the brain MRI so he ordered that along with the cervical MRI. Turns out I have 2 degenerated disks in my neck. (More Fibro stuff - I don't think so) I also have spots on my brain from transient ischemic attacks (mini strokes) in the past.
The next time I went to the cardiologist I took the MRI report. My cardiologist wanted a different kind of MRI called a MRA to be sure that it was from mini strokes. Apparently MS can mimic mini strokes on MRIs in the beginning. The treatment of my high cholesterol depended on what the white lesions (I think that’s what he called it) really were. In reading up on the mini strokes I found out that microvascular disease is common in people with autoimmune diseases. (Maybe it is from that Fibro stuff.) So he sends me back to my neurologist extraordinaire - NOT. (Found out he’s agnostic and a narcissus so maybe he does think he’s God.) I tried to make the appointment with EMG doc because he was the one that found it but since he only does pain issues, they wouldn’t do it.
The day of my appointment was a really foggy day. Bill couldn’t go with me and I had forgotten to call my friend Cathy who goes with me to appointments when Bill can’t. When he came in I explained that I was having a really bad day memory and comprehension wise so I may be slow to answer his questions and would need to make notes while he talked. He looked at me and said “is that the stuff y’all call fibro fog?” Then he said that he had looked at my MRI again and there was no need to do the MRA my cardiologist wanted. He said he’d do it if I insisted but couldn’t guarantee the insurance would pay for it since he didn’t think it was medically necessary. I couldn’t take a chance on that so I had to do without it.
Should I have insisted on the MRA? I don’t know. It probably is from the mini strokes. Since we don’t know for sure, I’m taking two different cholesterol medications and a blood pressure medicine because my cardiologist is having to treat me like it is mini strokes.
So if I have had this kind of runaround, how many people are there out there that have been through this as well? How many people are out there without a proper diagnosis of something that may kill them in the long run?
I’m afraid we’d really be outraged if we knew just how many of us are misdiagnosed. I think this happens many times because the doctors aren't paying attention to what we are saying because they think we are just nutsy boltsy with that Fibro stuff. In the case of my neurologist, he doesn’t even pay attention to what other doctors are saying.
My neurologist became my neurologist because he was the doc with the first available appointment when my PCP wanted me to see a neurologist. I was sent to rule out MS, to find out why I can't turn my neck far enough around to come close to touching my chin to my shoulder and to find out what was causing horrendous hip and leg pain. My exam consisted of him looking at me, asking a couple of questions and poking at my hip. This guy sat down, looked at me and said I didn't have MS and he felt sure the pain and not being able to turn my neck was that Fibro stuff. He did order an MRI as a "courtesy" to my PCP but only of my lower back and hips. He wasn't in the room with me 10 minutes and it may have not been that long.
My MRI showed 2 degenerated disk. (Just that Fibro stuff.) Fortunately, that diagnosis meant I got to see a neurosurgeon who is wonderful! He sat down with Bill and I and explained about Fibro and Myofascial pain and how they are different. Then he explained why surgery would be his very last option - he couldn't guarantee he wouldn't make the Fibro worse fixing the back pain. Fortunately the first nerve block worked.
I see a different neurologist for EMG studies for my neuropathy. This doctor noticed that I had to turn my body to look where most people would have just turned their head. He ask me about it and told him it had been going on for a while but the first neurologist I saw had attributed it to my Fibro. He said it was not from the fibro and that we had to find out why it was like that. He also saw my original referral and that I didn't get the brain MRI so he ordered that along with the cervical MRI. Turns out I have 2 degenerated disks in my neck. (More Fibro stuff - I don't think so) I also have spots on my brain from transient ischemic attacks (mini strokes) in the past.
The next time I went to the cardiologist I took the MRI report. My cardiologist wanted a different kind of MRI called a MRA to be sure that it was from mini strokes. Apparently MS can mimic mini strokes on MRIs in the beginning. The treatment of my high cholesterol depended on what the white lesions (I think that’s what he called it) really were. In reading up on the mini strokes I found out that microvascular disease is common in people with autoimmune diseases. (Maybe it is from that Fibro stuff.) So he sends me back to my neurologist extraordinaire - NOT. (Found out he’s agnostic and a narcissus so maybe he does think he’s God.) I tried to make the appointment with EMG doc because he was the one that found it but since he only does pain issues, they wouldn’t do it.
The day of my appointment was a really foggy day. Bill couldn’t go with me and I had forgotten to call my friend Cathy who goes with me to appointments when Bill can’t. When he came in I explained that I was having a really bad day memory and comprehension wise so I may be slow to answer his questions and would need to make notes while he talked. He looked at me and said “is that the stuff y’all call fibro fog?” Then he said that he had looked at my MRI again and there was no need to do the MRA my cardiologist wanted. He said he’d do it if I insisted but couldn’t guarantee the insurance would pay for it since he didn’t think it was medically necessary. I couldn’t take a chance on that so I had to do without it.
Should I have insisted on the MRA? I don’t know. It probably is from the mini strokes. Since we don’t know for sure, I’m taking two different cholesterol medications and a blood pressure medicine because my cardiologist is having to treat me like it is mini strokes.
So if I have had this kind of runaround, how many people are there out there that have been through this as well? How many people are out there without a proper diagnosis of something that may kill them in the long run?
Seriously! I had probably 6 doctors that told me I was crazy, it wasn't until the 7th doctor that someone finally admitted there was something wrong with me. I wish my experience was the exception, but I doubt it.
ReplyDeleteNo, you are not the only one. I am starting to think I might have more conditions than just fibro, but most drs hear you have fibro and they stop listening. To them, you are just crazy and making up stuff. They don't order exam or treat you like human. I can't seem to get anything done at my dr., but my husband goes and gets all these appointments and test to see what is going on with him. He ended up with numbers at the min to dx diabetes. I have DDD and plantar fasciitis. I had told them my feet hurt. I know there is treatment for plantar fasciitis, but they refused.
ReplyDeleteBeing misdiagnosed is not only infuriating, but depressing as well. Most especially when you felt there was something wrong and it was overlooked by your physician. Good thing you found another neurologist that helped you figure out the main issue with regard to your disk. Anyway, MRA can be simply ruled out, since you were advised that it’s not necessary at all. But if you think you need this, you can always go and set an appointment for it.
ReplyDeleteSabrina Craig @ Medical Attorney