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Twitcherama

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I was diagnosed in December with ALS. My doctor describes my form as atypical and slowly progressing. I've had full body fasciculations for over 2 years, but speech problems started slowly last January. Recently, my voice has gotten progressively worse. I also cough a lot, particularly when eating. I have no swallowing problems (that I can tell); no choking. My voice is really my only symptom. No weakness anywhere else. Does anyone else experience this coughing? Is there anything you've done to alleviate it?

I'm waiting to hear from my Dr.'s speech therapist, but are there any techniques or treatments that can help with voicing? I'm understandable, but definitely more slurring and speech is slow.

Thanks.
 

Atsugi

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Interesting. How is your tongue? Can it move all directions? Quickly? Just curious.
 

notBrad

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First off - I REALLY like your username, actually pissed I didn't think of it first... ;-)

Second - ask about neudexta. It helps me a lot. You can also get some plain old OTC cough syrup with dextromorphran (sp?) as the active ingredient and see if that helps.
 

Twitcherama

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My tongue has a lot of atrophy. I can barely move it side by side and definitely can't stick it out as much as I used to. Anybody tried hot tea with honey? I hate tea, but I'll work it out if that's what I need to do!

And thanks for the props on the username! I've had these twitches for so long and never knew what they were about. I wasn't worrying about them until my voice changed and figured I should get checked out. Ignorance is bliss, right? Should have stuck by that!

Can't say I'm happy to be here, but I'm here and happy to get whatever advice is out there.
 

affected

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Hi twitch

I would ask for a swallow study as the coughing when eating says to me you are having trouble swallowing. The food is not clearing properly possibly making you cough and this puts you at risk of aspirating.

Sadly no there are not treatments that improve anything with ALS. Your speech pathologist may give you some tongue exercises to try and keep some working muscles stronger a bit longer, but there isn't any evidence these do an awful lot for ALS.

You might want to start looking at text to speech apps for your phone or iPad/tablet now so that you are really familiar with using them before your speech is gone and you need them all the time.

I'm sorry about your diagnosis, we will help all we can.
 

Clearwater AL

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Just asking... you had body wide "twitches" for two years but when you noticed your voice was changing, your tongue has lots of atrophy but you don't have weakness anywhere else... you decided to get checked out? Maybe you could share a little more info of your journey to an ALS diagnosis.
 

Twitcherama

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My history:

I had a physical in 2014 in which I remember pointing out an occasional twitch between my thumb and forefinger (thenar muscle?). I can't tell you the exact timeline, but during that year, I remember more twitches, particularly in my upper body, but showing up all over. I would sit and feel like I was shivering, but I wasn't cold. It was weird, but it didn't alarm me and I basically ignored it. In January of 2015, I noticed I was missing some syllables and certain words became harder to say. That made me take some notice and go see my primary physician.

He ran a whole battery of blood tests, brain MRI, neck X-ray, you name it. Everything turned out negative, so he also referred me to a neurologist. At that point, I went Googling and, when searching for my symptoms, came up with ALS. That freaked me out, as you could expect. The first neurologist did an EMG which came up inconclusive. He was also thinking ALS, as well as Benign Fasciculation Syndrome. The EMG wasn't clean, but it didn't present enough to diagnose. Since he doesn't really handle ALS patients, he referred me to a specialist.

I went and saw that specialist a month later, and he also ran an EMG. Again, inconclusive. He felt it could be BFS except for my tongue twitching. He wanted me to come back in 6 months for another EMG and, basically, to wait it out and see if symptoms changed. I did not like this doctor at all, so I went looking for another neurologist. I felt he was fully qualified, but his bedside manner sucked, to be frank!

About 5 months later, in August, my voice got worse again. So, I made an appointment with Neurologist #3, a top guy in NYC. He didn't take my insurance so we paid full freight. Ouch. He did not perform any tests, though, but, based on my previous tests and symptoms, he felt I had Bulbar Palsy. Up until that point, I had really been thinking it was BFS, since I hadn't had any weakness in my limbs. He wanted me to come back in 2016 once I could get him on my insurance for more EMG tests, more blood and another MRI. I liked him and went about searching for new insurance.

Can I just say that health insurance in this country sucks? :) 99% of individual plans (I'm self employed) confine you to seeing doctors only within your own state. I needed a way to see doctors in NYC (I'm in NJ). Through a lot of digging, we found a plan, but could not get one that allowed me to see the 3rd neurologist again. Back to the hunt! In working with the ALS Society in NY, they connected me with my current neurologist, Dr. MacGowan, at Beth Israel/Mount Sinai. He offered to see me in December and only charge me a very low rate for the initial visit.

At my first visit with Dr. MacGowan, he performed an EMG, as well as all the other standard walking and strength test. Based on those findings, he officially diagnosed me with ALS. However, he said it was an atypical form, as I'd had it for two years without much in the way of symptoms. His feeling is that it's slowly progressing and may have a genetic component, but I have yet to get that tested. I've since seen him again in January for a full workup and meeting with all of his various specialists. It's really a great setup. They put you in a room and everyone comes to see you. It takes 4 hours, but it's done and you don't have to go back for 3 months.

There you have it. As you can imagine, 2015 sucked. I went 10 months with ALS hanging over my head without knowing whether I had it or not. Getting diagnosed was actually a good moment, because it brought clarity and I could move forward with some knowledge. Not that I'm thrilled with this!

My biggest concern, as I stated in the original post, is my voice has continued to worsen. I think it's progressed significantly since September, so I'm paranoid the next shoe is about to drop. Regarding the coughing, I'm not choking. I do have an overactive gag reflex, so that may have something to do with it. I put food in my mouth and start chewing and I cough. I cough when I speak sometimes as well. It's possible my throat muscles are weakening so saliva is running down into my windpipe, but I don't know for sure.

Thanks.
 

Twitcherama

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I can't figure out how to edit my post, so here's a quick add: Tongue atrophy is my only real weakness. My left hand has some tremors, but I'm fully mobile and can handle all standard tasks. Sometimes my hands cramp up, as well as my abdomen, but that's it. I feel fairly lucky in this regard.
 

scaredwifetx

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So sorry we are having to welcome you here. You have been down a long road to diagnosis. I thought our road was long and confusing.
I do hope you have a slow progression and look forward to seeing many posts from you.
 

BlueandGold

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Very similar story for me. My initial symptoms 2 years ago was constant twitching, mainly upper body. Within about 6 months of the twitching I had some atrophy and weakness in the left thenar. Was diagnosed with BFS after two EMG's, including one done at Cleveland Clinic. About 9 months after the twitching started, I began to experience slurring and one year after initial twitching I was finally diagnosed. I hope your progression continues to be very slow and please, consider voice banking before your speech gets worse. I so wish I had been able to do that but my speech went really fast.

Best of luck to you,

Vince
 

Twitcherama

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Thanks. I've been looking at a company called VocalID. I'm worried my voice has gotten so bad that it won't do me any good, but I'm going to start recording this week. They want about 7-8 hours of recordings, and I doubt I can do more than 15-30 minutes at a time.
 

affected

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That coughing could be little laryngospasms, very common with bulbar onset.

These were one of the first symptoms I noticed in my husband, that made me think something was going on, though never did I even consider something like ALS.

Around the same time he also started personality changes, but he had bulbar onset with FTD.

It was at least 6 months after the laryngospasms started before his speech started slurring, he started having trouble drinking water occasionally and the emotional lability started (EL is not connected to FTD).

I disagree with your neuro - I think many PALS can, with hindsight at least, realise that there were little symptoms long before they started to think anything was wrong.

My Chris actually had atrophy in his upper back/should blades noticed by a physio well over a year before the laryngospasms started. So he had mild symptoms years before ALS really started to attack him obviously and we discounted or ignored nearly all of them.

He had only speech/swallowing issues then for over 6 months before his hands started to weaken, and this was all before we got a diagnosis. By the time we did get diagnosed his hands and arms were showing atrophy, fasciculations and significant weakness.

I hope you continue to be fairly slow to progress.
 

Bob R

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One simple method I was taught is to tuck your chin into your chest at the moment you swallow. This will close your epiglottis and help prevent food or liquid from getting into your airway. Good luck.
 

Ells

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Hi Twitcher,

Sorry to hear your story.

I'd agree w/ Tillie and have swallowing x-rays done, if possible. At the very least, it can give you peace of mind.
They do a video fluroscopy of you taking for example, water, yoghurt and something dry like a cracker.

Ells.
 

KimT

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My first noticeable symptom was twitching on the bottom of my foot. It was accompanied by cramps in my foot whenever I went in the pool. Fast forward 18 months and I have all over twitching with almost constant eye twitching. If my eyes are not twitching I can make them start by closing them tightly. The bottom of my foot still twitches. as does my whole left leg. I'm still walking. My initial EMG was dirty and it showed mostly in my left arm. In retrospect, my left hand had already started to atrophy a year ago and I started dropping things about 6 months ago.

If I think back my left ankle has been weak a couple of years but not enough to give me a limp. I've fallen a couple of times and tripped
 
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