CarolSue
Distinguished member
- Joined
- Dec 16, 2015
- Messages
- 123
- Reason
- PALS
- Diagnosis
- 01/2016
- Country
- US
- State
- Kansas
- City
- Middle America
Hello,
I posted on here a month or so ago under the "do I have ALS" section. Well I'm back as a full fledged member, I guess, I got my ALS diagnosis one week ago.
I had the nerve conduction study January 18th and the neurologist told me immediately when he was finished. Although he said the test was not "definitive" (I think he wasn't seeing the twitching at the time) but knowing all my symptoms, said it was a dead giveaway. Apparently it is significant in my leg and very mild in my arm.
After returning to my original neuro (she doesn't perform the tests) the same afternoon, she looked at the results and confirmed what he told us. She told us she would be my doctor but I was more than welcome to get a second opinion or go to an ALS clinic? etc. She prescribed Rilutek and said to see her again in 6 weeks. I didn't get any real info about what to expect...that's probably my fault because I told both of them that I had done a lot of research and knew what I was facing.
I do plan to find an "expert" that can give me more of an idea about the rate of progression...I know everyone is different.
I'm a 57 year old female and noticed my first symptoms early spring in 2015. I guess you would call it limb onset. First thing was my gait changed, then early summer a slight limp. Fasculations began in my legs early summer and tried to climb onto the seat of a chair to reach something on top of my upper kitchen cabinets in early August and fell onto the chair...my right leg alone could not support my weight. Fasculations continued and spread, mostly still my legs, but can have them anywhere now...arms, back, stomach and now my left eyelid twitches too. It seems to be more active if I'm nervous...but some evenings it's just more active than others. Oh and the muscle cramps were noticed probably before the muscle twitching and just continued to get worse over the summer.
I've had 3 times total that I've had some minor choking on my own saliva. I've done that many times throughout my life...but the fact that it happened 3 times in one month told me there was probably something to it.
Started with the usual MRI's on my upper and lower back. Found some issues with my neck or upper back but they didn't feel it was causing my symptoms. Then MRI on my brain...was sooo hoping they would find MS but the brain was fine. Had the nerve conduction study...not sure of the exact names of each but had both, one without the needles and one with. Also has some bloodwork the same day which showed an mild elevation in "something or other" that indicates muscle degeneration?
My neuro says to go into it with the attitude that I will live for 20 years...she actually has a nurse who works one or two afternoons a week in her office that has had ALS for 20 years...lucky girl. I really need to know more so I can plan my LIFE.
Wondering if anyone knows of a good ALS specialist in Kansas or Oklahoma. I live on the southern border of Kansas so going north or south doesn't matter, I just want someone knowledgeable.
I know I'm droning on here...sorry for that. I know some of you have limited abilities reading/typing, etc as I've seen mentioned in other posts. Yes I've been lurking around her for a few months now and read a lot.
I appreciate any and all comments and it's comforting to know there are others out there that truly care and are willing to help!
Sincerely,
CarolSue
I posted on here a month or so ago under the "do I have ALS" section. Well I'm back as a full fledged member, I guess, I got my ALS diagnosis one week ago.
I had the nerve conduction study January 18th and the neurologist told me immediately when he was finished. Although he said the test was not "definitive" (I think he wasn't seeing the twitching at the time) but knowing all my symptoms, said it was a dead giveaway. Apparently it is significant in my leg and very mild in my arm.
After returning to my original neuro (she doesn't perform the tests) the same afternoon, she looked at the results and confirmed what he told us. She told us she would be my doctor but I was more than welcome to get a second opinion or go to an ALS clinic? etc. She prescribed Rilutek and said to see her again in 6 weeks. I didn't get any real info about what to expect...that's probably my fault because I told both of them that I had done a lot of research and knew what I was facing.
I do plan to find an "expert" that can give me more of an idea about the rate of progression...I know everyone is different.
I'm a 57 year old female and noticed my first symptoms early spring in 2015. I guess you would call it limb onset. First thing was my gait changed, then early summer a slight limp. Fasculations began in my legs early summer and tried to climb onto the seat of a chair to reach something on top of my upper kitchen cabinets in early August and fell onto the chair...my right leg alone could not support my weight. Fasculations continued and spread, mostly still my legs, but can have them anywhere now...arms, back, stomach and now my left eyelid twitches too. It seems to be more active if I'm nervous...but some evenings it's just more active than others. Oh and the muscle cramps were noticed probably before the muscle twitching and just continued to get worse over the summer.
I've had 3 times total that I've had some minor choking on my own saliva. I've done that many times throughout my life...but the fact that it happened 3 times in one month told me there was probably something to it.
Started with the usual MRI's on my upper and lower back. Found some issues with my neck or upper back but they didn't feel it was causing my symptoms. Then MRI on my brain...was sooo hoping they would find MS but the brain was fine. Had the nerve conduction study...not sure of the exact names of each but had both, one without the needles and one with. Also has some bloodwork the same day which showed an mild elevation in "something or other" that indicates muscle degeneration?
My neuro says to go into it with the attitude that I will live for 20 years...she actually has a nurse who works one or two afternoons a week in her office that has had ALS for 20 years...lucky girl. I really need to know more so I can plan my LIFE.
Wondering if anyone knows of a good ALS specialist in Kansas or Oklahoma. I live on the southern border of Kansas so going north or south doesn't matter, I just want someone knowledgeable.
I know I'm droning on here...sorry for that. I know some of you have limited abilities reading/typing, etc as I've seen mentioned in other posts. Yes I've been lurking around her for a few months now and read a lot.
I appreciate any and all comments and it's comforting to know there are others out there that truly care and are willing to help!
Sincerely,
CarolSue