ChristineRK
Active member
- Joined
- Jun 6, 2019
- Messages
- 72
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- OH
- City
- Westlake
Hello, everyone!
First, while I'm not thrilled that I was diagnosed with ALS - I'm glad to be part of such a compassionate, honest and helpful forum. Thank you in advance. This is the first time that I have done something like this - so if my etiquette is incorrect, PLEASE let me know!
Ok, so here are some things that I have gone through and some questions I have. I am almost 4 years after diagnosis. I was 48 years old when I was diagnosed. I noticed prior going to my neurologist, I was having problems. I was ALWAYS a 'go, go, go' person. Single mom with two children, volunteer for many groups/activities; and at times I would have two jobs.
I noticed that instead of taking an hour and a half to cut the grass, I would need to spread it over two days. The same with 'cleaning day' - I would need to sit down quite a bit as I would get tired very quickly and I noticed my thigh muscles hurting (the best way to describe that feeling was almost like a burning feeling). Then I started to lose weight rapidly. It was close to 40 pounds and I wasn't dieting.
I was falling here and there. One fall sent me to the ER because I couldn't bring my arms up fast enough to catch myself and all of my weight went onto my left shoulder. And I'm not one to go to doctors, let alone to the ER for myself. I had always been in very good health. I also started to notice food getting 'stuck' in my throat. I chalked it up to me scarfing food down too fast - but I felt it was happening too often, so I paid attention to it.
My fingers would also tremor. It was noticeable to others when I would text or something like that. I almost felt like saying 'I swear, I'm not drunk!' I had muscle wasting in one calf more that the other, and my collar bones were beginning to stick out. Fasiculations? Ummmmmm, YESSSSSS. Although, I didn't know what they were at the time.
My fatigue was not like me at all. I spoke to my PCP, and she started sending me out for blood work, MRI's, CT scans, etc. All came back normal. Then she sent me to a neurologist. My NCS was all good. Then came the EMG - I had 'static' on the machine when the needle was inserted and I didn't move at all, and didn't do what it should have done when I was asked to move my limbs. This included the areas in my back as well. I also had hyperreflexia. That day, he had done 3 out of my 4 limbs.
That evening I got a phone call asking me to come in for another NCS and EMG on the arm that wasn't done. After all was said and done I was told (for the second day in a row) that I had ALS. I really didn't know everything about this disease, so when I went home I looked it up and was in total shock.
Oh, prior to going to my PCP, I noticed that after I ate, I felt like something was pushing up against my diaphragm. After changing my diet around, I was sent to a gastro doc. I had an endoscopy where he noticed that even though the last time I ate, there was still quite a bit of food still sitting in my stomach. I did the 'emptying' test and when my doctor gave me the results; after extrapolating it out - it would have been approximately 9.5 hours before the scrambled eggs in my stomach were to have digested and move along. I tried the diet he gave me and the meds he gave me. But the meds were for short term usage only and neither suggestion worked.
SO, after the ALS diagnosis, it was suggested I have a J tube put in and gained some weight back. Several months after, I was hospitalized for another reason and it was discovered that my bladder wasn't 'working' (which I noticed that my body seemed to look like a water balloon and I had mentioned it for months before). A urologist came in and asked for me to be cathed. Well, let me tell you - immediately 1200 ml of urine came out to where my bag needed to be emptied right away and another one attached. After trying several things, it was determined that I needed to have a permanent catheter put directly into my bladder in order to urinate properly. I wear a bladder bag during the day and at night. Once I got used to it, I was grateful to have it.
(Earlier, based upon my complaints of water retention, I was prescribed lasix which only seemed to work 'sometimes' and not as well as I had hoped. So I am now off Lasix because of this wonderful catheter.
Okay - so since I was diagnosed, I was told to 'listen to my body and get a lot of rest' so as to save my energy to try to be able to do things I want to do. I also went to PT. My body definite looks nothing like the athlete I once was. BUT, after surfing the internet, I don't feel like I lost as much strength in my limbs as I read in 'what to expect'. I can still drive, I use a cane for stability and am not yet comfortable using my walker in public. The 'meat' on my hips is not there and my upper body (collar bones, shoulders) definitely look atrophied. I still have the fasiculations and I'm not as strong as I used to be - but I don't use a wheelchair.
I'm still able to tie my shoes, button my pants, etc. One of my questions is this: after being 4 years into this - shouldn't I be worse? I know, absolutely, that I should be grateful; but it is messing with my head. 'Maybe I don't have it' based on other cases I have read.
Recently I have started coughing. Sometimes a productive cough, sometimes it sounds like something is 'stuck' in my throat, but there isn't. When I went for a short walk with a friend, when we were almost done, I REALLY felt like my esophagus(?) was collapsing/closing up and I needed to really try to manipulate my muscles in my throat to catch my breath. Sometimes I wake up confused as to where I am (NOT every night, though!) and I think my kids are little again and living at home with me. Then once I move around - I come back to reality. (during all of this, I also started having Grand Mal seizures and am on medication for it.)
Over the last several months, my memory seems to be quite bad to where I can't remember seeing either an entire movie or parts of them. I also can't find the words I'm looking for as easily anymore.
Can anyone tell me with the 2 EMGs I had, yet I don't feel like I've lost a LOT of strength (yes, some) but not as much or as fast as a lot of articles read suggested I should and also looking at blogs.
I thank you all - and I'm sorry this is soooooo long. This will be the last long one, I promise. I just wanted to get it all out there, to give you enough information, to let me know what you think. Lastly, I have the results of my EMG should you want/need specifics.
Again, my thanks to you all!
~Christine
First, while I'm not thrilled that I was diagnosed with ALS - I'm glad to be part of such a compassionate, honest and helpful forum. Thank you in advance. This is the first time that I have done something like this - so if my etiquette is incorrect, PLEASE let me know!
Ok, so here are some things that I have gone through and some questions I have. I am almost 4 years after diagnosis. I was 48 years old when I was diagnosed. I noticed prior going to my neurologist, I was having problems. I was ALWAYS a 'go, go, go' person. Single mom with two children, volunteer for many groups/activities; and at times I would have two jobs.
I noticed that instead of taking an hour and a half to cut the grass, I would need to spread it over two days. The same with 'cleaning day' - I would need to sit down quite a bit as I would get tired very quickly and I noticed my thigh muscles hurting (the best way to describe that feeling was almost like a burning feeling). Then I started to lose weight rapidly. It was close to 40 pounds and I wasn't dieting.
I was falling here and there. One fall sent me to the ER because I couldn't bring my arms up fast enough to catch myself and all of my weight went onto my left shoulder. And I'm not one to go to doctors, let alone to the ER for myself. I had always been in very good health. I also started to notice food getting 'stuck' in my throat. I chalked it up to me scarfing food down too fast - but I felt it was happening too often, so I paid attention to it.
My fingers would also tremor. It was noticeable to others when I would text or something like that. I almost felt like saying 'I swear, I'm not drunk!' I had muscle wasting in one calf more that the other, and my collar bones were beginning to stick out. Fasiculations? Ummmmmm, YESSSSSS. Although, I didn't know what they were at the time.
My fatigue was not like me at all. I spoke to my PCP, and she started sending me out for blood work, MRI's, CT scans, etc. All came back normal. Then she sent me to a neurologist. My NCS was all good. Then came the EMG - I had 'static' on the machine when the needle was inserted and I didn't move at all, and didn't do what it should have done when I was asked to move my limbs. This included the areas in my back as well. I also had hyperreflexia. That day, he had done 3 out of my 4 limbs.
That evening I got a phone call asking me to come in for another NCS and EMG on the arm that wasn't done. After all was said and done I was told (for the second day in a row) that I had ALS. I really didn't know everything about this disease, so when I went home I looked it up and was in total shock.
Oh, prior to going to my PCP, I noticed that after I ate, I felt like something was pushing up against my diaphragm. After changing my diet around, I was sent to a gastro doc. I had an endoscopy where he noticed that even though the last time I ate, there was still quite a bit of food still sitting in my stomach. I did the 'emptying' test and when my doctor gave me the results; after extrapolating it out - it would have been approximately 9.5 hours before the scrambled eggs in my stomach were to have digested and move along. I tried the diet he gave me and the meds he gave me. But the meds were for short term usage only and neither suggestion worked.
SO, after the ALS diagnosis, it was suggested I have a J tube put in and gained some weight back. Several months after, I was hospitalized for another reason and it was discovered that my bladder wasn't 'working' (which I noticed that my body seemed to look like a water balloon and I had mentioned it for months before). A urologist came in and asked for me to be cathed. Well, let me tell you - immediately 1200 ml of urine came out to where my bag needed to be emptied right away and another one attached. After trying several things, it was determined that I needed to have a permanent catheter put directly into my bladder in order to urinate properly. I wear a bladder bag during the day and at night. Once I got used to it, I was grateful to have it.
(Earlier, based upon my complaints of water retention, I was prescribed lasix which only seemed to work 'sometimes' and not as well as I had hoped. So I am now off Lasix because of this wonderful catheter.
Okay - so since I was diagnosed, I was told to 'listen to my body and get a lot of rest' so as to save my energy to try to be able to do things I want to do. I also went to PT. My body definite looks nothing like the athlete I once was. BUT, after surfing the internet, I don't feel like I lost as much strength in my limbs as I read in 'what to expect'. I can still drive, I use a cane for stability and am not yet comfortable using my walker in public. The 'meat' on my hips is not there and my upper body (collar bones, shoulders) definitely look atrophied. I still have the fasiculations and I'm not as strong as I used to be - but I don't use a wheelchair.
I'm still able to tie my shoes, button my pants, etc. One of my questions is this: after being 4 years into this - shouldn't I be worse? I know, absolutely, that I should be grateful; but it is messing with my head. 'Maybe I don't have it' based on other cases I have read.
Recently I have started coughing. Sometimes a productive cough, sometimes it sounds like something is 'stuck' in my throat, but there isn't. When I went for a short walk with a friend, when we were almost done, I REALLY felt like my esophagus(?) was collapsing/closing up and I needed to really try to manipulate my muscles in my throat to catch my breath. Sometimes I wake up confused as to where I am (NOT every night, though!) and I think my kids are little again and living at home with me. Then once I move around - I come back to reality. (during all of this, I also started having Grand Mal seizures and am on medication for it.)
Over the last several months, my memory seems to be quite bad to where I can't remember seeing either an entire movie or parts of them. I also can't find the words I'm looking for as easily anymore.
Can anyone tell me with the 2 EMGs I had, yet I don't feel like I've lost a LOT of strength (yes, some) but not as much or as fast as a lot of articles read suggested I should and also looking at blogs.
I thank you all - and I'm sorry this is soooooo long. This will be the last long one, I promise. I just wanted to get it all out there, to give you enough information, to let me know what you think. Lastly, I have the results of my EMG should you want/need specifics.
Again, my thanks to you all!
~Christine
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