Gumbygyrl
Member
- Joined
- Aug 19, 2016
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- Tx
- City
- Mansfield
My symptoms go back About 1.5 years ago and never was scared up until 1.5 months ago. Some things may not even be related to eachother but I always add the just Incase it's a missing puzzle piece. The beginning symptoms seems much more tolerable then where I am as of today.
Almost 2 years ago I came down with this horrible flu that was the worst flu I have ever had. The chest pain involved was unbearable and just symptoms that I never experienced with a flu. Soon after that ended I started feeling like I was losing circulation in my hands and feet and then My skin looked red to where I would press hand on stomach or arm and you would see my print left behind. Dr ran blood and said didn't see anything.
Soon after that I got this horrible cold and cough and swallowing felt like needles for over a month. After that my right arm started to get heavy and I can feel surges rushing through it. It would come off and on.
Soon after that I got extremely light headed and heart started to palpate and very bad chest pains. I am still light headed/fuzzy to walk around but after 9 months my heart stopped palpating. I noticed my head started to become very weird as well such as being constantly light headed and would feel surges rushing through it and very fatigued. I also have sleeping problems and have woken up feeling numb for a few minutes and tingling. Neurologist did brain scan and nerve/muscle test and nothing. Brushed me off to anxiety but also sent me to rheumatologist because I had positive ANA.
Rheumatologist said wait it out for more symptoms. Well soon came more with pains that started moving throughout body but it was not joint pain it was more nerve or muscle cramp pain and started having times where I was not able to initiate a swallow. When I had hard time swallowing I felt a fuzzy back head pressure. Kept waiting it out and about 3 months ago I started having twitching in my thumb and elbow and even my vaginal area would squeeze together. Then very soon after I now have twitching all over and little cramp pains.
Went to new neurologist and I saw he wrote since I have been to several dr's I should get a psych evaluation done but he told me he would do EMG. (I didn't have anxiety) I would very happily admit to anxiety as that would be the best case scenario for all this. Anyway he did EMG and checked arms and legs and did cervical spine scan and all clean and said benign fasciculation. (Did not check bulbar muscles) Rheumatologist ran more blood and could find anything to go with ANA but prescribed plaquenil as just a trial. Everyone also kept trying to put me on cymbalta and I have heard such bad reviews and I truly know it's not anxiety causing all this. Just to make a dr happy I tried citalopram (did not work and there was nothing to make work cause I wasn't having anxiety)
my arm muscles burn when holding them up at times and also feels like it would if I was extremely cold and stiff trying to move them. .
Now to the part where I started having VERY concerning symptoms. On July 24th I started having a squeezing in my throat that was constant 24/7. When swallowing I started to feel like something just isnt working quite right. Almost like I'm not getting a full swallow or as if there is something in throat not working and other structures are making up for it. I have a thick sticky saliva I can't swallow completely down and can feel the fasciculations in muscles under chin/ throat.
I started to have more frequent episodes of just not being able to swallow. I try to initiate and nothing and try again and nothing then stop and try for 3rd and finally works. This happens 1-2x a day now. Swallowing feels like the back of my tongue isn't really doing much. I started feeling a slight tingle in tongue and so I looked and this is where I come apart. I see fasciculations and my tongue just doesn't look normal to me. I also have teeth indents on side that I'm sure might not be related? But after feeling like tongue doesn't feel right I start testing the strength and pushing it to sides and up and down.
Strength for most part seems to be there when I push it out but doesn't feel right when swallowing. Started feeling cramp pains and tongue feels very dry even though I am producing lots of saliva. Recently stuck tongue out to side and it is shaking and quivering very badly as well as when I stick it Upward. I 100% feel like something just isn't working properly and the muscles under chin feel the twitches and under tongue feels like bubble.
Reached out to dr and have been waiting weeks to see him and even emailed asking to squeeze me in sooner and he ignored me.. and this past week has just been me crying and crying all day. All I can think about is my kids and not being here. I'm 31 year old with a 2,3, 8 yr old. I feel like with my twitching and now the weak muscle in mouth that whatever I had going on before may not have been related to what it has now become. I know odds of ALS are low but I'm sure so are the odds of having constant fasciculations that are benign and then having something totally different be happening in my throat and tongue that is unrelated to everything else
Almost 2 years ago I came down with this horrible flu that was the worst flu I have ever had. The chest pain involved was unbearable and just symptoms that I never experienced with a flu. Soon after that ended I started feeling like I was losing circulation in my hands and feet and then My skin looked red to where I would press hand on stomach or arm and you would see my print left behind. Dr ran blood and said didn't see anything.
Soon after that I got this horrible cold and cough and swallowing felt like needles for over a month. After that my right arm started to get heavy and I can feel surges rushing through it. It would come off and on.
Soon after that I got extremely light headed and heart started to palpate and very bad chest pains. I am still light headed/fuzzy to walk around but after 9 months my heart stopped palpating. I noticed my head started to become very weird as well such as being constantly light headed and would feel surges rushing through it and very fatigued. I also have sleeping problems and have woken up feeling numb for a few minutes and tingling. Neurologist did brain scan and nerve/muscle test and nothing. Brushed me off to anxiety but also sent me to rheumatologist because I had positive ANA.
Rheumatologist said wait it out for more symptoms. Well soon came more with pains that started moving throughout body but it was not joint pain it was more nerve or muscle cramp pain and started having times where I was not able to initiate a swallow. When I had hard time swallowing I felt a fuzzy back head pressure. Kept waiting it out and about 3 months ago I started having twitching in my thumb and elbow and even my vaginal area would squeeze together. Then very soon after I now have twitching all over and little cramp pains.
Went to new neurologist and I saw he wrote since I have been to several dr's I should get a psych evaluation done but he told me he would do EMG. (I didn't have anxiety) I would very happily admit to anxiety as that would be the best case scenario for all this. Anyway he did EMG and checked arms and legs and did cervical spine scan and all clean and said benign fasciculation. (Did not check bulbar muscles) Rheumatologist ran more blood and could find anything to go with ANA but prescribed plaquenil as just a trial. Everyone also kept trying to put me on cymbalta and I have heard such bad reviews and I truly know it's not anxiety causing all this. Just to make a dr happy I tried citalopram (did not work and there was nothing to make work cause I wasn't having anxiety)
my arm muscles burn when holding them up at times and also feels like it would if I was extremely cold and stiff trying to move them. .
Now to the part where I started having VERY concerning symptoms. On July 24th I started having a squeezing in my throat that was constant 24/7. When swallowing I started to feel like something just isnt working quite right. Almost like I'm not getting a full swallow or as if there is something in throat not working and other structures are making up for it. I have a thick sticky saliva I can't swallow completely down and can feel the fasciculations in muscles under chin/ throat.
I started to have more frequent episodes of just not being able to swallow. I try to initiate and nothing and try again and nothing then stop and try for 3rd and finally works. This happens 1-2x a day now. Swallowing feels like the back of my tongue isn't really doing much. I started feeling a slight tingle in tongue and so I looked and this is where I come apart. I see fasciculations and my tongue just doesn't look normal to me. I also have teeth indents on side that I'm sure might not be related? But after feeling like tongue doesn't feel right I start testing the strength and pushing it to sides and up and down.
Strength for most part seems to be there when I push it out but doesn't feel right when swallowing. Started feeling cramp pains and tongue feels very dry even though I am producing lots of saliva. Recently stuck tongue out to side and it is shaking and quivering very badly as well as when I stick it Upward. I 100% feel like something just isn't working properly and the muscles under chin feel the twitches and under tongue feels like bubble.
Reached out to dr and have been waiting weeks to see him and even emailed asking to squeeze me in sooner and he ignored me.. and this past week has just been me crying and crying all day. All I can think about is my kids and not being here. I'm 31 year old with a 2,3, 8 yr old. I feel like with my twitching and now the weak muscle in mouth that whatever I had going on before may not have been related to what it has now become. I know odds of ALS are low but I'm sure so are the odds of having constant fasciculations that are benign and then having something totally different be happening in my throat and tongue that is unrelated to everything else
Last edited: