Mine is a long story - so I will stick to the neuro part - but I also have PBC -primary biliary cirrhosis an autoimmune disease, and osteo arthritis. About 5 yrs ago I started getting wierd neuro symtoms - the corner of my lower lip went numb and I began having problems with dizziness. I found a neuro otologist to treat the dizziness, but I have had increasing neuro symptoms. The problem is my symtoms are intermittent so they don't always show up at the doctor's office. I went to my liver doctor with a list of symtoms and he told me which were related to the PBC and which weren't. Basically, the neuro symptoms were unrelated and said I should see a neurologist. By the time I got to the Neurologist my symptoms included increasing memory loss, difficulty with word retreival, difficulty sorting papers, following knitting patterns or cooking recipes - all sorts of difficulties with my cognitive thinking and an episode of increasing weakness. I also starting having weird sensations of vibration inside by left hip, later my right leg and then my feet. I still get them but they are much milder. I also had an intermittent left foot drop which lasted about 3 months but is gone now. I also have mild burning and tingling on the bottom of my feet. I have also found myself in places near home and not known how to get home and have found that on a few occasions, people I know well seem to change appearance or, at least I can no longer recognize them.
Anyway, I finally got an appointment with the neurologist who found out that I had decreased sensation on my lower legs and said I had peripheral neuropathy. So he scheduled an EMG. Well, the EMG was done, I guess on one of my good days - so it didn't show anything. The neurologist got mad, threw up his arms and asked me what he thought he should do. Lacking medical training, I suggested "more tests". Then he asked me if I thought I should have an MRI. I told him that was a good idea. The MRI came back negative. So he again asked me what I thought he should do. This time I had done some research and thought I might have sjogren's. He said "Do you want me to test for that?" By then I had no confidence in him and decided to go to a rheumatolgist.
The rheumatolgist decided there was something going on so ran a bunch of blood test which gave no definitive diagnosis, called it "vague autoimmune disease" and said come back when I had more symtoms. Well, since my symtoms were coming and going and changing, this was not acceptable. So I went to an eye doctor (sjogren's causes dry eyes). He thought I probably should go to Shands Clinic at the University of Florida (I live in Orlando) as they have specialist in sjogren's and other autoimmune diseases.
Well, they did a biopsy and I do have some rare disease of my salivary glands, but no sjogren's. However, I had trouble scheduling a follow-up appointment with the rheumatologist. The dentists that did the testing suggested I see a neurologist, since most of my undiagosed problems were neuro related.
So while waiting for the rheumatologist, I saw the neurologist. Regretably, it was on a "good" day, so he found no neurological symtoms and said the other neuro was wrong in his findings. He said all my symtoms were due to the PBC. I tried to explain to him that my liver doctor had said they weren't. He said I had nothing wrong neurologically. I reminded him that my symtoms came and went and I was having a good day. I asked him if my intermittent foot drop came back - could I come and see him that day. He said I would have to wait a week and a half for an appointment. We finally agreed that I should have "Neuro-psychological testing" and if anything showed up, he might do more thinking and reconsider his diagnosis.
I was really angry, and decided to go back to the ear doctor that had originally treated my dizziness and tell him it was back, worse and different. He said that the neurologist should have figured out that something was going on just by the change in those symptoms. He decided to redo the tests for the dizziness and found that the area previously affected was fine but now I had a problem in a different area of my inner ear and prescribed new medication.
In the meantime, my primary doc said the neuro was wrong as I have an elevated ANA (not high enough for Lupus) and there was something going on. My symtoms were not in my imagination or anxiety, etc. but physical and he was sure the rheumatologist would figure it out.
Well, I have now seen the rheumatogist - he has no idea what is going on except that it is neurological in nature and not related to the PBC or anyother rheumatologica disease. So he says I should follow-up with a neurologist (not a happy thought for me with my previous experience). So he has dismissed me.
In the meantime, I had the neuro-psych testing done. It was all day and my feeling at the time was I was taking intelligence tests and nothing related to my symtoms. Finally the last two tests made my brain feel like it does on bad days.
Well, according to the physchologist - I am very intelligent, but she could find nothing neurologically wrong with me. However, I read the report. Under behavior, she said my gait was slow and unsteady, my speech was slurred and I had difficulty with word retreival. I pointed out that these were neuro signs, but she said she couldn't find anything on the test relating, therefore they didn't matter as the "brain does peculiar things."
I also dropped from "above average" on most of my tests to "average" on the ones that I said related to how I was feeling. She said those were fine because I was still average. Then on one test I was below average - but she said I had arthritis so that didn't matter, even though the finger tested is not showing any arthritic problems. She did admit that if I didn't have the arthritis, she would have looked at that test differently. Her conclusion: I am under a great deal of stress (I am currently retired and under the least stress of my life) and depressed. (On really bad days, I get depressed. Apparently, I spend too much time worrying about my illness. I need psycho therapy. I told her I needed a diagnosis. And as for worrying about my illness, in the month since I had seen her, my balance was way out of kilter and I had fallen 3 times. Plus the slurred speech was new and in December I had another episode of weakness.
The rheumatolgist did suggest that I was perhaps early in my illness and that was why no one knew what was wrong with me. He also said, even if they find the cause, there will probably be nothing that can be done. I am very frustrated .
So now, I will try for an appointment with another neurologist. I do feel better having written this. If anyone has had a similar experience or suggestions, I would love to hear.
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