Bfloyd
Member
- Joined
- Apr 8, 2012
- Messages
- 20
- Reason
- Learn about ALS
- Country
- US
- State
- Wa
- City
- Richland
Good morning, After being sent to a second nuro dr (nuro muscular) He did a quick once over and said your fine. Mind you since the first nuro and second really don't get that a size 14 to a 10 in a couple months is not fine. But looking at me I look pretty good. I called the office a few days later basically saying I'm not happy with the appt and felt I was not being heard. The nurse said he felt confident in his dianosis and I could come back if wanted. My other nuro Dr tho thought he would be doing a muscle biopsy and he didn't feel nessicary.
I do believe that they are correct in the no ALS diagnosis. It seems pretty clear that no weakness no als. I'm wondering if you have any thoughts about the following. I do know there are many many diseases that can be simple or complex that can cause these symptoms.
Test results back and normal are EMG (full body), blood work, full spine and brain mri normal, passed office routine nuro testing. I am grateful for that.
Symtoms as of today: Spasms and twitching you can see just watching my body.
Skin crawling to point of hair on arms standing up
Lip twitches when smile
Have lost a large amount of muscle and or fat to point of that anorexic look.
Chest muscles concave, feel like nothing holding my bones together and breast have fallen a few inches and changed shape.
Breathing has changed, I"m assuming from loss of chest muscle but don't like to self diagnosis.
My biggest change is my neck started spasming like a large pulse and my neck lost a lot of muscle and when contracted looks like I"m a size 0 in the neck.
I"m a pretty solid woman and have never been skinny but when my clothes are falling off, bra won't fit because there's not fat on my ribs it's a big change. If I was trying to diet I'd understand.
I have learned from 10 years of chronic pain the worst you can do if goggle and assume the worst. This is the first time I've been very concerned. My family Dr is concerned also as she knows what I looked like a few months ago but the 2 nuro's don't seem to be .
She wants to send me to the U of Wa, they think I"m fine.
Do you just keep searching and pushing till you get at least some sort of explanation or is this normal with nuro symtoms. I'm getting tired physically and mentally from this trying to figure it out. I've had tinnitus for years and that makes me weary enough. I can deal with chronic pain, there's alot you can do to help that.
Ted you had said no weakness no als, and I get that. If I"m going to live with non stop spasm and loss of muscle than it would be nice to know how and why it happen so quick in 6 months.
I feel like I've been dismissed a bit by the last nuro dr. I feel sometimes when they see you on chronic pain meds , had back surgery and anti depressant it's all in your head.
We have looked into some of the symtoms of using long term medication but my family Dr does not see that as the issue.
I've seen some have suffered for years before a correct diagnosis wither it be MS, ALS and many others.
I really don't know where to go from here. It's a 4 month wait to university since this will now offically be a third opinion.
I appreciate your thoughts . Bobbi Jo
I do believe that they are correct in the no ALS diagnosis. It seems pretty clear that no weakness no als. I'm wondering if you have any thoughts about the following. I do know there are many many diseases that can be simple or complex that can cause these symptoms.
Test results back and normal are EMG (full body), blood work, full spine and brain mri normal, passed office routine nuro testing. I am grateful for that.
Symtoms as of today: Spasms and twitching you can see just watching my body.
Skin crawling to point of hair on arms standing up
Lip twitches when smile
Have lost a large amount of muscle and or fat to point of that anorexic look.
Chest muscles concave, feel like nothing holding my bones together and breast have fallen a few inches and changed shape.
Breathing has changed, I"m assuming from loss of chest muscle but don't like to self diagnosis.
My biggest change is my neck started spasming like a large pulse and my neck lost a lot of muscle and when contracted looks like I"m a size 0 in the neck.
I"m a pretty solid woman and have never been skinny but when my clothes are falling off, bra won't fit because there's not fat on my ribs it's a big change. If I was trying to diet I'd understand.
I have learned from 10 years of chronic pain the worst you can do if goggle and assume the worst. This is the first time I've been very concerned. My family Dr is concerned also as she knows what I looked like a few months ago but the 2 nuro's don't seem to be .
She wants to send me to the U of Wa, they think I"m fine.
Do you just keep searching and pushing till you get at least some sort of explanation or is this normal with nuro symtoms. I'm getting tired physically and mentally from this trying to figure it out. I've had tinnitus for years and that makes me weary enough. I can deal with chronic pain, there's alot you can do to help that.
Ted you had said no weakness no als, and I get that. If I"m going to live with non stop spasm and loss of muscle than it would be nice to know how and why it happen so quick in 6 months.
I feel like I've been dismissed a bit by the last nuro dr. I feel sometimes when they see you on chronic pain meds , had back surgery and anti depressant it's all in your head.
We have looked into some of the symtoms of using long term medication but my family Dr does not see that as the issue.
I've seen some have suffered for years before a correct diagnosis wither it be MS, ALS and many others.
I really don't know where to go from here. It's a 4 month wait to university since this will now offically be a third opinion.
I appreciate your thoughts . Bobbi Jo