lydia
Senior member
- Joined
- Jan 25, 2007
- Messages
- 682
- Country
- US
- State
- ny
- City
- buffalo
Hello All,
I am still irritated so I will try to keep this short. I had my follow up with my neuro (recall at first visit she spent a whopping 15 minutes with me before scheduling me for a slew of tests and then writing in report the differential was MND, PD or muscular disorder). This time she spent FIVE MINUTES.
She said the SPECT indicated no parkinsons or motor nueron disease. Wait, let me describe that better.....she patted my knee and said while grinning, "no parkinsons, no motor neuron disease." I tried to ask questions and she did not look at me but kept reading my test results (for the first time apparently).
While there my right hand was shaking/trembling/moving in a way I have never experienced...a tremor perhaps (by the way, it is my LEFT side that is problematic....). I was morbidly excited it was doing that while in the office...the doctor would actually see it! I showed it to her by shoving it between her face and my records and she again patted my knee and said while grinning, "benign fasciculation syndrome."
Realize none of this conversation on her part is in full sentences, just fragments. English is not her first language and I felt as if I was having a conversation with someone who couldn't understand me and who was not up to speaking in full sentences. This WAS NOT an issue during first appointment. It was surreal.
Then she said something about low B12 and wrote a "script" for over the counter B12. I tried to ask will that make me feel better, that I feel awful (the cramps, the stiffness, the soreness, the overall fatigue). She said yes. Then she said something about "ischemia" and that I could chew a baby aspirin (she didn't say how often)...by then I had given up in frustration. She was doing the "walking out the door backwards thing" by then. I said to her back, "so is that it then?" and she replied, in a full sentence, "I have given you the whole panel for {something neurological}. That is all I can do" (and to come back in 8 weeks).
So in summary, I did learn that SPECT can indeed indicate patterns that suggest motor neuron disease or parkinsons, and that fortunately at this point in time I have no such patterns (from my report: "I am not seeing any profile suggestive of motor neuron disease or idiopathic Parkinson's disease or parkinsonism inducing disorders") (But Suzannj-I know what you mean...did I just go too soon?). But how interesting for those searching for diagnosis; maybe ask for one? They seem to be in larger cities, especially if there is a university or medical school nearby.
I learned that my b12 is low (310; that is low?) and that I will (supposedly) feel better if I take some.
I learned I have benign fasciculation syndrome (by the way, she didn't define this, she didn't tell me how it relates to my complaints, she didn't even tell me what 'fasciculation' was....of course I DO know because I frequent this site...)
I didn't learn anything about "ischemia" until I got my records today. She said in visit something about me chewing a baby aspirin as if it was something utterly unimportant, she didn't explain the term ischemia at all...I didn't even dwell on it. BUT then I got my records, and at the risk of being vulgar...what the hell does this mean: SPECT perfusion study is abnormal. ...Active ischemia on a small vessel disease basis in the anterior temporal lobes, white matter and diffusely in the cortex with the worst changes in the white matter...This likely represents global brain impairment and it is suspected to be small vessel disease.
Please tell me this just sounds awful...really, how bad could it be if baby aspirin helps? And could whatever this is be connected to my original issues that prompted me to visit doctor to begin with (cramps, twitches, soreness, stiffness, weakness, slurring and neuro discovered mild atrophy) or is all of that explained by allegedly low B12 and "BFS"?
I meant to keep it short. Thanks for reading, especially if you made it to the end.
Lydia
I am still irritated so I will try to keep this short. I had my follow up with my neuro (recall at first visit she spent a whopping 15 minutes with me before scheduling me for a slew of tests and then writing in report the differential was MND, PD or muscular disorder). This time she spent FIVE MINUTES.
She said the SPECT indicated no parkinsons or motor nueron disease. Wait, let me describe that better.....she patted my knee and said while grinning, "no parkinsons, no motor neuron disease." I tried to ask questions and she did not look at me but kept reading my test results (for the first time apparently).
While there my right hand was shaking/trembling/moving in a way I have never experienced...a tremor perhaps (by the way, it is my LEFT side that is problematic....). I was morbidly excited it was doing that while in the office...the doctor would actually see it! I showed it to her by shoving it between her face and my records and she again patted my knee and said while grinning, "benign fasciculation syndrome."
Realize none of this conversation on her part is in full sentences, just fragments. English is not her first language and I felt as if I was having a conversation with someone who couldn't understand me and who was not up to speaking in full sentences. This WAS NOT an issue during first appointment. It was surreal.
Then she said something about low B12 and wrote a "script" for over the counter B12. I tried to ask will that make me feel better, that I feel awful (the cramps, the stiffness, the soreness, the overall fatigue). She said yes. Then she said something about "ischemia" and that I could chew a baby aspirin (she didn't say how often)...by then I had given up in frustration. She was doing the "walking out the door backwards thing" by then. I said to her back, "so is that it then?" and she replied, in a full sentence, "I have given you the whole panel for {something neurological}. That is all I can do" (and to come back in 8 weeks).
So in summary, I did learn that SPECT can indeed indicate patterns that suggest motor neuron disease or parkinsons, and that fortunately at this point in time I have no such patterns (from my report: "I am not seeing any profile suggestive of motor neuron disease or idiopathic Parkinson's disease or parkinsonism inducing disorders") (But Suzannj-I know what you mean...did I just go too soon?). But how interesting for those searching for diagnosis; maybe ask for one? They seem to be in larger cities, especially if there is a university or medical school nearby.
I learned that my b12 is low (310; that is low?) and that I will (supposedly) feel better if I take some.
I learned I have benign fasciculation syndrome (by the way, she didn't define this, she didn't tell me how it relates to my complaints, she didn't even tell me what 'fasciculation' was....of course I DO know because I frequent this site...)
I didn't learn anything about "ischemia" until I got my records today. She said in visit something about me chewing a baby aspirin as if it was something utterly unimportant, she didn't explain the term ischemia at all...I didn't even dwell on it. BUT then I got my records, and at the risk of being vulgar...what the hell does this mean: SPECT perfusion study is abnormal. ...Active ischemia on a small vessel disease basis in the anterior temporal lobes, white matter and diffusely in the cortex with the worst changes in the white matter...This likely represents global brain impairment and it is suspected to be small vessel disease.
Please tell me this just sounds awful...really, how bad could it be if baby aspirin helps? And could whatever this is be connected to my original issues that prompted me to visit doctor to begin with (cramps, twitches, soreness, stiffness, weakness, slurring and neuro discovered mild atrophy) or is all of that explained by allegedly low B12 and "BFS"?
I meant to keep it short. Thanks for reading, especially if you made it to the end.
Lydia