Hi everyone, I am new here and want to ask for a bit of advice.
For 2 1/2 years I have had fatigue, pain, muscle spasms, difficulty climbing stairs, mental fog, everything much worse in the afternoon/ evening. I have been unable to work and I believe I am currently plateaued at my new normal, and have gotten pretty good at navigating the debility. Sometimes my muscles (even my heart it feels like) spasms and flutters so violently you can see it from the outside.
I had an episode roughly 12 years ago that lasted about a month that was similar but not this intense, and it resolved on its own.
Incase it is of interest- the recent symptoms flared after a simple spinal surgery that resulted in a neurogenic bladder, which then required catheter, which then involved a cascade of 15 infections -one right after another. Some bladder, some skin, some MRSA, some resistant Ecoli. Also frequent dizziness/ syncope episodes that have resolved.
Here is my question- the neurologist did lots of labs, spinal MRI, EMG, and tilt table autonomic functioning tests. He said I was "fine" and refused to do anymore testing. I went to a teaching hospital in town (Portland) for a second opinion, and they repeated the EMG and a couple more labs- all negative. They said there was no more diagnostics to do. Since I was still receiving long term disability from my job (nurse), the disability company required I get a function study done by a PT- they noted a lot of deficit, but to be fair- that appointment coincided with a flare.
No one tested me for Lyme, in fact my infectious diseases doctor told me it didn't exist. No one has ever imaged my brain, nor evaluated my Spinal Fluid.
My understanding is that some of the conduction tests and labs should have been done after fatiguing me somehow, but they didn't. Anyone one know if this concern is valid?
Should I keep up trying to find a neurologist? I tried to schedule with MAYO clinic, and they said they couldn't give me an appointment. Does anyone understand why no one will work me up further? Does this normally take this long to get a diagnosis? I have no current or historical mental health concerns, not an addict, just so confused!
Very grateful for any opinions and/ or wisdom!
-Kris
For 2 1/2 years I have had fatigue, pain, muscle spasms, difficulty climbing stairs, mental fog, everything much worse in the afternoon/ evening. I have been unable to work and I believe I am currently plateaued at my new normal, and have gotten pretty good at navigating the debility. Sometimes my muscles (even my heart it feels like) spasms and flutters so violently you can see it from the outside.
I had an episode roughly 12 years ago that lasted about a month that was similar but not this intense, and it resolved on its own.
Incase it is of interest- the recent symptoms flared after a simple spinal surgery that resulted in a neurogenic bladder, which then required catheter, which then involved a cascade of 15 infections -one right after another. Some bladder, some skin, some MRSA, some resistant Ecoli. Also frequent dizziness/ syncope episodes that have resolved.
Here is my question- the neurologist did lots of labs, spinal MRI, EMG, and tilt table autonomic functioning tests. He said I was "fine" and refused to do anymore testing. I went to a teaching hospital in town (Portland) for a second opinion, and they repeated the EMG and a couple more labs- all negative. They said there was no more diagnostics to do. Since I was still receiving long term disability from my job (nurse), the disability company required I get a function study done by a PT- they noted a lot of deficit, but to be fair- that appointment coincided with a flare.
No one tested me for Lyme, in fact my infectious diseases doctor told me it didn't exist. No one has ever imaged my brain, nor evaluated my Spinal Fluid.
My understanding is that some of the conduction tests and labs should have been done after fatiguing me somehow, but they didn't. Anyone one know if this concern is valid?
Should I keep up trying to find a neurologist? I tried to schedule with MAYO clinic, and they said they couldn't give me an appointment. Does anyone understand why no one will work me up further? Does this normally take this long to get a diagnosis? I have no current or historical mental health concerns, not an addict, just so confused!
Very grateful for any opinions and/ or wisdom!
-Kris
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