Diagnosed with ALS

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Diagnosed with ALS

Postby physerv24 on April 16th, 2015, 8:43 am

First and foremost, I think all the members on this forum are amazing. You reach out to strangers and offer your sincerest advice on how to help them with their symptoms and anxiety and provide a place of comfort for a condition that, unless you have it, no one else understands. So, I applaud you all.

The reason I want to share this experience with you is not to instill fear and panic but rather to show you how my situation, symptoms and progression are NOTHING like what 99.999% of the members on this forum are experiencing. Having said that, I'd like to walk you through my journey and I'll comment on what I and my docs overlooked at the time but why it all makes sense now. I was diagnosed with definite ALS yesterday at the WVU ALS approved Nuerologic Center by the Director of the ALS Clinic. After conducting my EMG, he called my wife in to the exam room and gave us the news. He said he knew it was ALS even before he did the EMG based on the atrophy and weakness in my left hand and my speech. Now, going back to the beginning.

In April of 2014 I noticed a twitch in my left bicep. It was fairly constant and never let up. NOT a few twitches a few times per day but CONSTANT. Within two weeks the twitching had spread everywhere in my body. Again, NOT a few twitches here and there but FAR TOO MANY TO EVEN COUNT. Now, and this is very important, I WAS ALSO EXPERIENCING CRAMPS THROUGHOUT MY BODY. These were not your normal cramps that you get when you over-exert a muscle but ones I had never experienced before. For example, when I would bend down to tie my shoe, I would get cramps in my abdomen. The muscle would tighten up and I would have to quickly straighten up to get the muscle to release. If I would reach over my shoulder to scratch my back, my bicep would do the same thing and I would have to quickly straighten out my arm to get the muscle to relax. I thought this was all part of the twitching. The most noticeable symptom that concerned me from the beginning is what was happening in my left hand. Although I immediately noticed that the thenar muscle (web between the thumb and pointer finger) on my left hand was smaller than the right, I chalked that up to being right hand dominant. But, there was more than that. WHEN I WOULD GRIP SOMETHING TIGHT WITH MY LEFT HAND, MY FINGERS WOULD PULL IN TOWARDS MY PALM AND LOCK IN PLACE. Carpal tunnel symptoms?? That's what I thought but the NCS test I had in June and September did not show a conduction block in the ulnar nerve. Again this all started with twitching AND cramping in April.

My first clinical neurological exam was at the end of May with a GENERAL NEUROLOGIST. I passed all strength tests and he did not notice any atrophy anywhere on my body. He scheduled my first EMG on June 12th. Even though I was having symptoms on my left side, he only did my right side. Other than fasciculations, the EMG was clean. I was diagnosed with Cramp Fasciculation Syndrome. Now, fast forward a couple of months to August. Next symptom, excess phlem (or so I thought). I was constantly clearing my throat. Especially after eating. This was attributed to summer allergies and/or the acid reflux I have had for 15 years. However, what I now know is that it was NOT EXCESS MUCUS. I had no allergy symptoms that would be typical like sneezing, itchy watery eyes, stuffy nose, etc. Now I know that my throat muscles had started to WEAKEN and what was normal mucus that everyone produces was becoming hard for me to swallow but NO ONE picked up on this and passed it off. In September I was referred to the Cleveland Clinic Neuromuscular Center by my PCP. by this time the atrophy was really showing in my left thenar. Cleveland did an extensive EMG on my left side. You can read my post from October to get the details there. What they concluded was that my abnormal EMG was due to a compression in my cervical spine although the MRI that was done did not support anything that serious. I was told to control my anxiety and do daily stetches to help with the cramps. They did not schedule me for a follow-up, they released me. In October, I began having issues with my speech. Ever so slight. I would stumble over certain words. Other days I would speak fine. In November, and I remember this so vividly, I was at the grocery store and picked up a bag of flour. It had a hole in the bottom and I got flour on my hand. I went to blow the flour off my hand and hardly any air came out my mouth. It came out of my nose. This was very concerning to me. I also noticed that I could no longer sing like I used to and I had been singing since I was 5 years old. I had lost my higher range and my voice seemed to cut out if I tried to sustain a note. Went to the ENT doc and he examined me thoroughly. Said my soft palate was moving fine and it was likely due to sticky mucus on my vocal cords. THESE WERE SUBTLE SIGNS OF WEAKNESS THAT WAS SPREADING AND GETTING PROGRESSIVELY WORSE.

By December, 8 months after the first symptoms, I had truly began to slur my words. I sounded drunk, plain and simple. Everyone noticed it although I must say I noticed it way before others. We know our bodies and we know when something isn't right. In January I went back to my general Neurologist because of the speech issues and at this point my left hand had gotten worse. I could not button my shirt collar and found it difficult to button my jeans. I requested to be sent to WVU and that leads to where I am today.

What I want to point out to you is that every person with ALS progresses at a different rate and with varying degrees of symptoms. Although there may be some people who wake up one day and cant move a certain limb, I believe this is the exception not the rule. With my case my weakness and atrophy took months to present. It was there from the beginning but slowly progressed. When the weakness is slight, it can be and is often overlooked or attributed to something else. ALS is a progressive disease but make no mistake IT DOES PROGRESS. For those of you who only have twitching as a symptom and you have had this for months with no signs of weakness; YOU DO NOT HAVE ALS!!!!! It will rear it's ugly head and even if the docs miss it at first, you will know. When I went to my appointment yesterday, although I continued to hope for a different diagnosis. I knew. I have read hundreds of posts from everyone on this board and I can tell you with 100% certainty that none of you are like me. You may have had some of the same symtoms at one time or another but you don't have the weakness that I developed.

If any of you want to PM me to ask any specifics I would be happy to answer you. I want to continue to help people as long as I can. I may have ALS but ALS does not have me!

Sincerely,

Vince
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Re: Diagnosed with ALS

Postby leroyb on April 16th, 2015, 9:00 am

Very sorry to hear that Vince.

There is hope though. Nurown, Brainstorm, Genervon and more.

Thinking of you are and your family.

This isn't directed at anyone in particular but if you want to come into this thread and dissect Vince's post please consider what you are doing.
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Re: Diagnosed with ALS

Postby Yuliasir on April 16th, 2015, 11:17 am

it is so sad Vince...
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Re: Diagnosed with ALS

Postby Dual_CoRed on April 16th, 2015, 11:58 am

God bless you Vince and thank you for your story.
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Re: Diagnosed with ALS

Postby Ghayes420 on April 16th, 2015, 12:13 pm

Vince, as I have been following you through your journey you know my thoughts and prayers have been with you and your family and we will continue to pray for a cure or reversal. Thank you for having the courage to explain your symtpoms and tell your story.
With support and love,
Greg
A very proud fasciculator since 8/14/2011. :)
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Re: Diagnosed with ALS

Postby physerv24 on April 16th, 2015, 12:24 pm

You guys mean so much to me. Wish I could give you all a big bear hug!
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Re: Diagnosed with ALS

Postby Yuliasir on April 16th, 2015, 12:37 pm

you definitely have my hugs
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Re: Diagnosed with ALS

Postby garym on April 16th, 2015, 3:22 pm

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
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Re: Diagnosed with ALS

Postby misterjuanperalta on April 16th, 2015, 4:24 pm

Condolences to you and your family.
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Re: Diagnosed with ALS

Postby SecretAgentMan on April 16th, 2015, 6:48 pm

Very sorry to hear the news, but you have the right attitude. A diagnosis is just a categorization of symptoms fitting a condition. Have you tried or considered going gluten free in your diet? Some people notice a profound difference. I just found a reference to an abstract published from the American Journal of Neuroradiology about a patient whose symptoms were mimicking ALS and they responded very well to a gluten-free diet. It may be worth a shot. Here is a link to the article if you are interested: http://www.glutenfreesociety.org/gluten ... rosis-als/

Hang in there and never give up. You will be in our thoughts and prayers.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Diagnosed with ALS

Postby misterjuanperalta on April 16th, 2015, 7:07 pm

For those who may be panicking, according to the CDC, "ALS is age related; most people with ALS find out they have it when they are between 55 and 75 years of age."

Source: http://wwwn.cdc.gov/als/alsfaq.aspx

According to Dana.org, for those younger than 40 years, "10 percent to 20 percent of people with ALS develop it before 40." Benign is likely.

Source: http://dana.org/Publications/GuideDetails.aspx?id=49991
Last edited by misterjuanperalta on April 17th, 2015, 6:27 am, edited 2 times in total.
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Re: Diagnosed with ALS

Postby TwitchyDoc on April 17th, 2015, 5:04 am

I am so, so sad and sorry. I hope you will not get attacked by idiots calling you fake as often happens because this - despite your initial clean EMG - does make sense and does sound like cases I know about.
Stay strong, attitude is so important!
Best wishes, Docen
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Re: Diagnosed with ALS

Postby misterjuanperalta on April 17th, 2015, 6:25 am

Hello everyone,

Please notice that April began his first twitch and within six months, in October, he had speech problems, aside from everything else. It's a quick disease most often. So try to not freak out as I am trying not to.

Regards
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Re: Diagnosed with ALS

Postby Christina91013 on April 17th, 2015, 6:49 am

Vince,
I don't post very often on this site but i felt compelled to respond to you. My prayers and thoughts are with you and your family; I am so deeply sorry for this. Thank you for sharing this with us on the board. You truly have a lot of courage to explain your journey.

Christina
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Re: Diagnosed with ALS

Postby physerv24 on April 17th, 2015, 7:43 am

Again, thanks to everyone for their thoughts and prayers. And Juan, you are exactly right. For those who may be panicking, go back and read my post very carefully. My whole journey has been a couple weeks shy of 1 year. 1 year. In that time I went from twitching and cramping to barely being able to use my left hand and sounding like I am drunk 24/7. ALS progresses. Maybe a little slower for some (at least I hope) but make no mistake it progresses. No wax and wane symptoms that get better for 2 or 3 months then come back. I may have had a day here and there where my symptoms didn't SEEM as bad but they were always there and they got WORSE.

Please understand that the purpose of my post is to inform you of what this disease looks like FOR ME so that you will know you are not like me. I'm sure that many of you can find symptoms that are similar to mine but you have to look at the entire picture; not just one symptom.

My best to you all.

Vince
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Re: Diagnosed with ALS

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