Hi,
I’m in limbo. My PCP thinks I’ve had MS sx for years. He's r/o a whole bunch of stuff and has currently referred me to a cardiologist to r/o my irregular heartbeat as a cause for my MS type sx.
I’m seeing a new neuro this week who specializes in movement disorders to r/o psychogenic dystonia. I have been referred by my last neuro who thinks it’s all in my head. I’ve waited more than a year.
My dystonic movements are history. However, since last fall I have had poor walk/gait and two incidents of bowel incontinence right before onset and right after. I have had headaches that are unusual for me and an opthalmologist insists that I tell the neuro about these also.
I have dx mental health issues that my psychiatric team believes to be separate from my physical sx.
I am bringing my:
MRIs, the first showing lesion, the second showing none.
CT report which talks about a benign growth in my head.
Report from psychiatrist that talks about my sx looking musculoskeletal or it seems like it could be MS as my symptoms come and go and have been absent for as long as four years.
I probably should remember to tell neuro that my one parent has tremors when holding things like paperwork. Other parent and one sibling used to have restless legs syndrome.
I’m bringing my husband with me as he lends credibility to me and my health concerns.
My neighbours, doctors, nurses are all alarmed that I have not seen a neuro yet as it has been months that I have had poor walk/gait. They would have the same wait time as me.
Please help me know how to act in my appointment. If I get emotional I get judged. If I go in and remain pleasant with little or no emotion I get judged.
If I bring in paperwork listing sx I get judged, but if I don’t I forget and bring up something that’s not important to the appointment like a tremor that lasted for less than one minute. I’m either nervous or have cog fog.
Now here’s a trick question. Should I rest so as to continue to keep my gait/walk sx quiet or should I try and resume the activities that I could do at the end of last summer as this will certainly trigger all of my sx. Sorry if this is an odd question buy I don’t know which way to go - ethics vs reality?
I have a camp of neuros who have said it’s all in my head, I have had a couple of neuros who specialized in research and could only do specific testing and then passed me along when they couldn’t figure me out. I have a psychiatric team that says that my mental and physical issues happen to be separate.
I’m very nervous about this whole in your head thing. And I’m nervous about how to better prepare for a more successful appointment where I am taken seriously.
Advice, support, any comments are welcome.
I’m in limbo. My PCP thinks I’ve had MS sx for years. He's r/o a whole bunch of stuff and has currently referred me to a cardiologist to r/o my irregular heartbeat as a cause for my MS type sx.
I’m seeing a new neuro this week who specializes in movement disorders to r/o psychogenic dystonia. I have been referred by my last neuro who thinks it’s all in my head. I’ve waited more than a year.
My dystonic movements are history. However, since last fall I have had poor walk/gait and two incidents of bowel incontinence right before onset and right after. I have had headaches that are unusual for me and an opthalmologist insists that I tell the neuro about these also.
I have dx mental health issues that my psychiatric team believes to be separate from my physical sx.
I am bringing my:
MRIs, the first showing lesion, the second showing none.
CT report which talks about a benign growth in my head.
Report from psychiatrist that talks about my sx looking musculoskeletal or it seems like it could be MS as my symptoms come and go and have been absent for as long as four years.
I probably should remember to tell neuro that my one parent has tremors when holding things like paperwork. Other parent and one sibling used to have restless legs syndrome.
I’m bringing my husband with me as he lends credibility to me and my health concerns.
My neighbours, doctors, nurses are all alarmed that I have not seen a neuro yet as it has been months that I have had poor walk/gait. They would have the same wait time as me.
Please help me know how to act in my appointment. If I get emotional I get judged. If I go in and remain pleasant with little or no emotion I get judged.
If I bring in paperwork listing sx I get judged, but if I don’t I forget and bring up something that’s not important to the appointment like a tremor that lasted for less than one minute. I’m either nervous or have cog fog.
Now here’s a trick question. Should I rest so as to continue to keep my gait/walk sx quiet or should I try and resume the activities that I could do at the end of last summer as this will certainly trigger all of my sx. Sorry if this is an odd question buy I don’t know which way to go - ethics vs reality?
I have a camp of neuros who have said it’s all in my head, I have had a couple of neuros who specialized in research and could only do specific testing and then passed me along when they couldn’t figure me out. I have a psychiatric team that says that my mental and physical issues happen to be separate.
I’m very nervous about this whole in your head thing. And I’m nervous about how to better prepare for a more successful appointment where I am taken seriously.
Advice, support, any comments are welcome.
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