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Gumbygyrl

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Aug 19, 2016
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Learn about ALS
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Tx
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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
 
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Can't read your huge block of text.

Please create paragraphs.

If I can't read it then our PALS using eyegaze technology have no hope. (and they can make readable text with their eyes only)

Thanks
 
Sorry. I did read the sticky notes a few weeks ago and have been a wreck the past few days. I will try to figure out how to edit this post. Very sorry
 
It almost sounds like the whole thing might be chronic fatigue with pretty bad fibromyalgia. You can get very anxious with fibro because of the multitude of symptoms. Take a look at some of the fibro support forums and see if you find and common ground there. It's not ALS.
 
Sometimes I wonder where the troll begins and the anxiety riddled poster begins. I have no idea why you think you would have ALS. Nothing you describe sounds like it. Nothing. Listen to your doctor and follow up with a psych eval. CBT can do wonders.
 
I knowALS really well, especially bulbar onset. There is just nothing in your list of issues that indicates ALS.

I truly have no idea how you ended up with that as any kind of possibility.

Not to say there isn't something wrong. But I would leave ALS out of the picture. If you continue to be frustrated with the doctor you are working with then by all means get another one. Good luck to you.
 
Thanks for editing swallowing concerns seem to be common among people with bfs so your history is not unusual in that group. You had a normal emg and apparently normal exams- that combination says no ALS. Congratulations. Stop crying and do a happy dance!
 
I went 1.5 years with feeling sick and no anxiety due to it. But due to the full body fasciculations that feel like worms are constantly crawling through me (ALS symptom), trouble swallowing that has progressed (ALS symptom), tongue feels fatigued when moving to different sides of mouth, muscles under tongue/chin/throat feel like not working properly and I would assume that may be leading to not being able to initiate a swallow. My tongue does not look or stick out the same as it once did and use to not quiver all over.

I have read several post on here and did not want to write anything because I know this is a serious and sensitive matter for many. ALS/bulbar ALS was not on my list of anything until my throat and swallowing started progressing following the constant twitching and feels pretty rapid the way it happened. I have read post on here from people with bulbar and a lot of my symptoms that I currently have seem to be what others went through.

I agree how things started 2 years ago seem like something totally different then what I'm experiencing today which is Why I feel like what I'm going through right now just seems like it has nothing to do with what was going on before. I can 100% say anxiety was not playing a role in anything until 1.5 months ago after throat was affected. I decided to finally post because now that I do feel worried and extremely sick to my stomach and lost 10 lbs in the last month and with crying of fear most hours of the day.

Doctors have said its not Fibromyalgia. I told the doctor I would very happily get a psych evaluation if needed then he said to hold off. That's why I agreed to taking citalopram just to make one of the doctors happy.

I do appreciate your responses. I know that some may feel my symptoms are pointless on this site, but I appreciate those responses letting me know that as well. This experience I'm going through is very real and scary and eye opening.
 
Thank you all for your responses everyone. I had started writing that last one when I saw someone wrote about me being a troll or something. My question I have is that if I have bulbar ALS and no bulbar muscles were checked would the leg and arm EMG have still showed it ? I do try to just push everything out of my head and try to forget about it. But with swallowing and throat muscles being used all day long it's hard to get out of head when every swallow and even every relaxation in that area just isn't feeling normal. Thanks again and have a good evening everyone.
 
This sounds like no ALS onset I have ever heard of. Thank you for editing, that made all the difference!

Your swallowing and tongue issues are nothing like bulbar ALS and I know that one really well.

As has been said BFS can cause all of your symptoms - that is very different to anxiety.

I can't imagine how scared you are, but truly ALS is not even remotely on your radar.
 
GG,

Yes, if you had bulbar-onset ALS, you would not have had a normal EMG. As others have said, "full body fascics" are more indicative of BFS than anything else. But if you want your swallowing/throat evaluated, that can happen via a speech pathologist or an ENT. You might have some kind of swelling or inflammation secondary to allergies or an infection. Feeling bad in that respect can certainly trigger symptoms elsewhere.

But one thing we know for sure: ALS is not in your picture, so please funnel your worries toward a plan for spending your likely long life doing something besides crying in fear.

Best,
Laurie
 
Thank you Laurie. I had went to ENT and they did Barium swallow and that showed nothing. He never did the scope down throat though. Maybe I should check back with ENT.
 
Last night was the first night in weeks I was able to fall asleep with calmness, but as soon as I woke up and swallowed it all went down again. The back base of My tongue feels so weak and fatigued 24/7 and when sitting up just feels like a sagging muscle. My right arm and into my thumb feels very heavy and fatigued
 
Hon I'm sorry you are going through this but it isn't ALS.

That's all we can do here - you asked, we answered NO.

ALS is a disease of the brain, it's not a muscle disease so you don't have all those feelings.

You need to keep working with your doctors - after all we are just strangers on the internet and can't even see you. We are however either terminally ill or looking after someone terminally ill, so our fatigue is huge and we need our energy for that.
 
Myasthenia gravis can have facial symptoms. Multiple sclerosis could be a possibility or an inflammatory myopathy. It sounds more li,e some viral or bacterial infection triggered your symptoms. I would ask your gp about it....

YOU DONT HAVE ALS SYMPTOMS.
 
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