edwards5257
Distinguished member
- Joined
- Jul 16, 2012
- Messages
- 160
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- KY
- City
- Paducah
I never post and I hope I'm in the right spot for a couple of questions. I am not intending to bother or annoy and know its difficult for many of you to respond.
I tentatively have been diagnosed with small fiber neuropathy. I may get a muscle biopsy in Feb. This would be through my St Louis neuromuscular specialist.
I am going for a 3rd opinion on Oct 9 in Nashville. He's supposed to be the best at St Thomas Hospital. My gp set this up. I want to try and let this be my last referral. I realize I am probably doctor shopping.
I am going to try to go in with an open mind and try to not mention internet stuff I have read.
I'm going to try and let the neuro do his job he was trained to do. That is my hope and plan. In other words not point out I think I have some "form" of motor neuron disease, etc. which I have been assured not in the past.
How does a neuro notice or spot what I would call "core weakness"? What I consider my abdomen, lower stomach, chest and back? I'm weak everywhere (perceived I am told) but it seems not to be to me. I hv read the stickies so I know what is said there.
Final question - when it comes to my neck, mouth, tongue, throat areas I am hoping that a neuro can detect the weakness all in those areas of course but not sure how exactly. They ve done some tests with my tongue , whistling, etc. & have assured me of no twitching or wasting in the past. Just kind of asking. Sometimes I wonder if I should see an ENT. But it's never been brought up by me or any neuro. No EMG for those areas have ever been done.
Yes I've had clean EMGs, NCVs, EEG, MRI and MRA and tons of bloodwork both by my hometown neuro and neuromuscular specialist in St Louis. The continued all over weakness and twitching just - well I stay so scared. And yes I see someone for depression and take meds.
I think I'm to the point I've got to try to accept and know it can take time, years in fact. I
guess I need to really try to accept the new "normal" for me but it sure is hard. Thanks for your time and any or all responses. I am widowed but my two grown sons and one grandchild keep me going.
I tentatively have been diagnosed with small fiber neuropathy. I may get a muscle biopsy in Feb. This would be through my St Louis neuromuscular specialist.
I am going for a 3rd opinion on Oct 9 in Nashville. He's supposed to be the best at St Thomas Hospital. My gp set this up. I want to try and let this be my last referral. I realize I am probably doctor shopping.
I am going to try to go in with an open mind and try to not mention internet stuff I have read.
I'm going to try and let the neuro do his job he was trained to do. That is my hope and plan. In other words not point out I think I have some "form" of motor neuron disease, etc. which I have been assured not in the past.
How does a neuro notice or spot what I would call "core weakness"? What I consider my abdomen, lower stomach, chest and back? I'm weak everywhere (perceived I am told) but it seems not to be to me. I hv read the stickies so I know what is said there.
Final question - when it comes to my neck, mouth, tongue, throat areas I am hoping that a neuro can detect the weakness all in those areas of course but not sure how exactly. They ve done some tests with my tongue , whistling, etc. & have assured me of no twitching or wasting in the past. Just kind of asking. Sometimes I wonder if I should see an ENT. But it's never been brought up by me or any neuro. No EMG for those areas have ever been done.
Yes I've had clean EMGs, NCVs, EEG, MRI and MRA and tons of bloodwork both by my hometown neuro and neuromuscular specialist in St Louis. The continued all over weakness and twitching just - well I stay so scared. And yes I see someone for depression and take meds.
I think I'm to the point I've got to try to accept and know it can take time, years in fact. I
guess I need to really try to accept the new "normal" for me but it sure is hard. Thanks for your time and any or all responses. I am widowed but my two grown sons and one grandchild keep me going.