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09-26-2011, 01:05 PM | #1 | |||
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and guess what? he says I am improved since our last visit 4 1/2 years ago, when I was ON MEDS. On the PD sclae I was a 7 and this visit I was a 5. He wasn't the doc to diagnose me, either. So I asked him if he thought it could be "something else". He was agreeable to that; it's not MS, ALS or as far as he could see any particular degnrative disease. Huh?
He wnet on to describe the channels in my brain and neurons at the mitochondiral level...kind of lost me. But in the end, wants me (if I wnat to) try magnesium & calcium at bedtime. In the shock of this, I didn't ask many questions, so have sent him an email. He did the fingertapping, toe tapping, pushed me to check my reflexes and said it looked good. The secondary symptoms baffled him, like the voice, urinary, sense of smell, stiffness, etc.... Baffled? I am baffled, to say the least. 8 yrs I've been thinking this is PD, my health has definitely deteriorated. Not sure what to think. |
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09-28-2011, 07:27 AM | #2 | ||
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I saw a MDS who is ruling out other things it could be. I just had an MRI yesterday. He wants to rule out stroke because in 5 years the tremor hasn't crossed over. I had a blood test last week to rule out Wilson's disease. I forgot to tell him I should be checked for Lyme as we lived in New England shortly before the tremors started. I have another appointment in two weeks to discuss test results.
The neuro diagnosed me with PD in 2006 but didn't run tests to rule out other stuff. I'm glad it's being done now. Kind of confusing. I don't care what they call it as long as they do something to help symptoms if they can't cure it. But they need to know what it is to do that. So I guess I do care what they call it. Still confused after all these years. |
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"Thanks for this!" says: | EmptyNest68 (09-28-2011) |
09-28-2011, 08:58 AM | #3 | |||
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Thus is a great reminder to anyone who has not progressed much in the course of a year...you should begin seeking second and third opinions. Going eight years and not needing meds....and your doctor never thought not to revisit the diagnosis? Yikes.
May I ask why your docs thought PD in the first place? We should not hav the diagnosis if we only have one symptom of the three cardinal signs. For diagnostics we are too have two of three the main symptoms: Slowness, rigidity and tremor. Many conditions have secondary Parkinsonian symptoms some respond to levodopa. I am surprised doctors have not not ruled out some sort of dystonia. For the record, I thought PD is manly an asymmetric disorder. Marcia, I presented with a right hand tremor and it is still one side going on eight years later. Difference is I added slowness and mild rigidity. If they cannot confidentially re-diagnose you then I would be packing for a regional PD and Movement Disorder clinic. Just look at Harley's post....she lost 27 years thinking she had PD so don't give in...there are ways to differentiate. Good luck! Laura |
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"Thanks for this!" says: | EmptyNest68 (09-28-2011) |
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