gailveronica
16-06-20, 14:12
If you've been reading my posts over the last 2 years or so, you know I've had a slew of neurological issues. The most prominent recently has been neuropathy in my left leg and foot, painful and numb at the same time. It's spread to my right foot now, and my last neurologist asked if I could live with it then told me I "graduated" his practice.
My primary care sent me to a specialist 90 minutes away because she's convinced I have some sort of issue. I had a NCV/EMG and most looked okay except for some fasciculations in one small muscle of my left foot and some higher insert activity, more nerve than muscle (so ALS is not a consideration).
I had a 60 minute meeting with the neurologist finally (5 month waiting list) and she said we will be doing this:
1) she will look over my MRIs for central nervous disease - if she doesn't find anything (she doesn't expect to) we will do
2) another NCV/EMG because she said the first was not thorough and if this doesn't show anything we will do
3) skin punch biopsy for small nerve fiber damange
I've looked up some scary things and I asked her two questions:
1) could this be ALS?
Her answer was "This is unlikely."
2) could this be amyloidosis? (this is a VERY scary protein disorder, treated like myeloma, with a very dismal prognosis)
Her answer was "Amyloid is a consideration."
Then she told me that the hoofbeats for me may mean I'm a zebra, as we've excluded most of the common causes of neuropathy in a 37 year old woman.
I'm terrified. I didn't expect that to be said to me, and it's what I fear most. It's a scary protein disorder that infiltrates your organs and shuts them down, one by one. It can start in the nerves. It's very rare, but it's on every chart for peripheral neuropathy.
Her post-visit notes said:
"My strongest suspicion is for a peripheral process, either multiple focal compressive/traumatic lesions, versus radiculopathy, versus more diffuse small fiber neuropathy that may have an underlying autoimmune/inflammatory etiology."
I'm really scared that I have something sinister going on. And that my doctor confirmed my suspicions - while I feel validated, I'd have been happier if she'd said "no, that's outrageous" like all my other doctors did. I even went to a rheumatologist who took bloodwork that is around 60% accurate for amyloidosis and she said it ruled it out --- but this new neurologist said that there is other testing to be done to completely rule it out.
Ugh.
I don't know how to stop looking things up. I've been waking up in sweats for the past 2 days which I know is anxiety. My neuropathy is worsening and I know this is again, triggered by my anxiety and possibly to some extent psychosomatic.
I'm just not really sure how to deal with moving forward with something knowing that there is a very real chance it could be something serious.
I'm currently in therapy for health anxiety, but my therapist has said distractions last only so long, we need to sit with the feelings of discomfort and fear -- I don't know how to do that. I could be dead in a few years, from something absolutely horrible that wreaks havoc on my entire system. How can one sit with that?
My primary care sent me to a specialist 90 minutes away because she's convinced I have some sort of issue. I had a NCV/EMG and most looked okay except for some fasciculations in one small muscle of my left foot and some higher insert activity, more nerve than muscle (so ALS is not a consideration).
I had a 60 minute meeting with the neurologist finally (5 month waiting list) and she said we will be doing this:
1) she will look over my MRIs for central nervous disease - if she doesn't find anything (she doesn't expect to) we will do
2) another NCV/EMG because she said the first was not thorough and if this doesn't show anything we will do
3) skin punch biopsy for small nerve fiber damange
I've looked up some scary things and I asked her two questions:
1) could this be ALS?
Her answer was "This is unlikely."
2) could this be amyloidosis? (this is a VERY scary protein disorder, treated like myeloma, with a very dismal prognosis)
Her answer was "Amyloid is a consideration."
Then she told me that the hoofbeats for me may mean I'm a zebra, as we've excluded most of the common causes of neuropathy in a 37 year old woman.
I'm terrified. I didn't expect that to be said to me, and it's what I fear most. It's a scary protein disorder that infiltrates your organs and shuts them down, one by one. It can start in the nerves. It's very rare, but it's on every chart for peripheral neuropathy.
Her post-visit notes said:
"My strongest suspicion is for a peripheral process, either multiple focal compressive/traumatic lesions, versus radiculopathy, versus more diffuse small fiber neuropathy that may have an underlying autoimmune/inflammatory etiology."
I'm really scared that I have something sinister going on. And that my doctor confirmed my suspicions - while I feel validated, I'd have been happier if she'd said "no, that's outrageous" like all my other doctors did. I even went to a rheumatologist who took bloodwork that is around 60% accurate for amyloidosis and she said it ruled it out --- but this new neurologist said that there is other testing to be done to completely rule it out.
Ugh.
I don't know how to stop looking things up. I've been waking up in sweats for the past 2 days which I know is anxiety. My neuropathy is worsening and I know this is again, triggered by my anxiety and possibly to some extent psychosomatic.
I'm just not really sure how to deal with moving forward with something knowing that there is a very real chance it could be something serious.
I'm currently in therapy for health anxiety, but my therapist has said distractions last only so long, we need to sit with the feelings of discomfort and fear -- I don't know how to do that. I could be dead in a few years, from something absolutely horrible that wreaks havoc on my entire system. How can one sit with that?