Diagnosed with ALS

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Re: Diagnosed with ALS

Postby Ghayes420 on April 22nd, 2015, 1:17 pm

I too deal with excess phlegm, frog-in-throat, clearing of the throat, and voice going not just hoarse, but out, requiring the clearing of my throat. I have had this for 3.5 years and it is worse during allergy season like right now.
A very proud fasciculator since 8/14/2011. :)
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Re: Diagnosed with ALS

Postby misterjuanperalta on April 22nd, 2015, 1:22 pm

I also get that sneezing without reason. Our symptoms are so bizarre.
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Re: Diagnosed with ALS

Postby physerv24 on April 22nd, 2015, 1:56 pm

Not to beat a dead horse, but.....
For those of you who are in a panic because of the symptom I shared I will reiterate again, you have to take my symptoms together as a whole, not just pick out the one's that are similar. No allergies, sneezing, watery eyes, sore throat, hoarse throat, etc. I went from constantly clearing my throat to obvious speech problems in less than 8 months. Pay attention to the veterans on this board like Greg.

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Re: Diagnosed with ALS

Postby Sherlock on April 24th, 2015, 1:32 pm

Something to point out because I suffer from severe breathing and throat issues. I have confirmed severe reflux and post nasal drip. When the ENT scoped me, he saw severe inflammation on my vocal chords and around the esophagus. If someone gets checked out, ask about inflammation. My doctor works on ALS patients - he said there's no inflammation, and things are seen very early on in the way the muscles hang. Reading this gives me a little anxiety too, but you can't give in to that.

I've had much the same symptoms as Vince for the past 18 months, along with some breathing difficulty. I was tested at an approved ALS clinic and the neurologist said I was fine. I've been working out 5 days a week, increasing weights in every major muscle group. That's not weakness. Most of us don't have it.

Vince, you're incredibly brave to come here and talk to us. I'm so sorry that you were diagnosed with this disease, but there's hope. I'll pray for you and your family everyday.

God bless you, truly. And thank you for sharing your story.
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Re: Diagnosed with ALS

Postby wookiette on May 1st, 2015, 5:19 am

First of all, thank you for you to explain the situation and your great courage. I hope you will have the same evolution than Stephan hawking (who was diagnosed when he wasin his twenties and is still hera more than fourty years after) ...

It's sure the first reaction of an hypocondriac like me and lots of people here is "oh my god and if my twitch i have since x years were not benign), and in the minute for my part after i first read your post i had a few twithc that reappeared, but if we really read without panick your post it's very reassuring for many of us and i wanted to thank you for that.

Sorry for my bad english, i hope you'll understand the general idea.
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Re: Diagnosed with ALS

Postby raindog on June 14th, 2015, 12:57 pm

garym wrote:Vince,

I send you and your family my thoughts and prayers. I also have to thank you for taking the time to come back to this site and explain your condition and how it progressed to an als dx. The fact that you cared enough about the members here to come back and explain the differences between your experience and the typical bfs one says a lot about the type of person you are. Thanks again and fight like hell....I love the fact that als doesn't have you! I'm a firm believer that adversity doesn't build character but rather it reveals character. You my friend are a man of high character, that is clear to me.

Take care,
Gary


Very well said Gary.

Vince i'm so sorry for your diagnosis but i would also assume you now know what is actually going off and how you now manage your time and future with the people who mean the most to you. I sincerely hope the progression slows down to help you fulfill all your dreams with loved ones.

My best wishes and prayers for the future for both you and your family
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Re: Diagnosed with ALS

Postby veryworried123 on September 8th, 2015, 9:09 pm

Perhaps just a simple question

We always hear the phrase "we can tell if it's the big nasty" as soon as we do an emg

I've heard and read that phrase hundreds of times

Why was the first emg normal? Would it have not shown certain abnormalities that would cause concern?

What other key significant details can anyone share outside of the difference from first visit to the confirmation
Thanks
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Re: Diagnosed with ALS

Postby Yuliasir on September 8th, 2015, 11:11 pm

Veryworried,
as far as I can see, often the problem is that EMG is done in the region which is not affected by the LMN damage yet - for some reasons.
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Re: Diagnosed with ALS

Postby veryworried123 on September 8th, 2015, 11:26 pm

Yulisar hope all is well!

Any one else want to weight in...some very very detailed explainations in the link below

viewtopic.php?f=4&t=2014&p=12075&hilit=bulbar+EMG#p12075
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Re: Diagnosed with ALS

Postby guitarguy11 on September 9th, 2015, 10:50 am

I am by far no expert at this, but I think there are many things that led to them not seeing it earlier. One, ALS is rare. His first EMG was done early into his symptoms. It was done on a side that was not yet experiencing symptoms, but look at the Cleveland Clinic work up - they did his left side, saw issues, but did not diagnose ALS. It is a rare disease. Doctors are not likely to jump at that diagnosis, unless they see the clinical weakness, times passes and they do more than one EMG (just my guess there). There are other stories out there of people that twitched for 6 months to a year before diagnosis. Believe me, I am not trying to scare you or anyone else (my fear right now is probably equal to 2 or 3 people's fear on this site right now :D ) These stories are readily available online and on this site.

What we need to take away from his story, is that if we have been twitching for a long time, and have not developed weakness, then we don't have the disease we dread. Like many have said on this site, time is on our side - he longer we have this with no weakness, the better the chances of not having ALS. Also, we should pray that he and his family are doing well and enjoying whatever time he has on this Earth to the fullest of his ability.

I have been twitching since June 2014. The twitches move around. I have had hot spots, but mostly they move around throughout the day. My legs have been experiencing some pain and tightness recently that I don't think I have experienced in exactly the same way before. I still fear the dread disease. That fear comes and goes. But I can still do sets and sets of squats. I can still backpack and hike miles and miles. I can walk my dog until she collapses. I can do sets of push ups. I am training for chin ups and getting stronger. I still can do my karate training - not saying I am any good at it, but I can still do it! I don't think a doc would say I have clinical weakness. I have another checkup with my neuro in a few weeks, so I will find out what he says then. He will probably look at me and say, "Pete, you are crazy as always" and "Stop consulting Dr. Google." In fact he would scold me for frequenting this site again. I don't think it is a coincidence that when I started to come back to this site in July, my twitches and muscle tightness became much more noticeable. If he tells me all of those things, I will be forced to agree.

We (I) need to concentrate on living our daily lives, enjoying everyday to the best of our ability and being thankful for what we have and what we can do. The rest will be what it will be. I will close with this, and believe me I don't mean to be harsh - I wish I could wave a magic wand and remove all anxiety from myself and all the sufferers on this site - but if I have the disease I dread, then so be it. Worrying won't change anything.
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