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Zaphoon

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This is being posted in the "Do I Have ALS?" forum because I want to address this to all of you out there with that question. The answer statistically would be, probably not but please read this post as I shared the same question.

Over a period of a year or two, I developed symptoms to included frozen/weakened shoulder, muscle tightness that made it difficult to go up steps, get out of bed and lift things above my head. I had twitches in my calf muscles as well as tightness and cramps. My voice would go out on me after getting gravelly and on occassion, I would have difficulty swallowing saliva. There was also the Babinski sign and brisk reflexes. Add all of these up and it equals SCAREY! Google this stuff and you come up with ALS.

This past May, my GP referred me to a neuro who, in June, diagnosed me with "Progressive Weakness - Suspected MND" after doing a host of testing (NCV, EMG, MRI, Blood work) all within normal parameters. She did say it didn't look like ALS. I was then further referred to a certified MDA clinic where they specialize in all things neuro-muscular. You think I was beginning to become a bit concerned about all of this? Of course! In July, again the NCV and EMG were normal. MRI - clean. Blood work all within acceptable parameters. They also stated it was not ALS but shook their heads and said they'd see me again in about 4 months to see if anything changed.

In the meantime, the spasticity lightened up and no more episodes of it being difficult to rise from bed. No more swallowing problems. The voice gets gravelly but who cares.

I just came back from the follow-up appointment at the MDA clinic this week. My only further complaint was weakness spreading into my lower right arm. No NCV/EMG was necessary. No more bloodwork or MRI for that matter. Just a simple examination of reflexes (which had been hyper) and muscles. His words were he didn't think any of this was neurological in nature. (Insert a big sigh here, folks!)

Reflexes were good. Physical presentation was good. Yes, the fascics and cramping continue with no explanation but no explanation is needed. If the doctor, who is an MDA specialist wasn't alarmed, neither am I.

The explanation for my lower arm is that it is most likely being overworked to compensate for weakened muscles in the frozen shoulder.

The explanation for 2 frozen shoulders, in my mind, is that I am right in that age group where frozen shoulder syndrome strikes - 52.

The bottom line is it is okay to start out alarmed at the onset of unfamiliar symptoms, especially when some of them are shared with a diabolical disease.

It is not fair to the neurologist (or to yourself) to second-guess or doubt them; especially if they are a specialist in all things neuro-muscular.

You may already know that there is something out there known as BFS (Benign Fasciculation Syndrome). This could explain my problem. There are many things that can cause twitching in muscles and most of them are harmless and even beneficial in building muscle tone. If the EMG on you is clean after you have had twitches, the twitches are benign in nature and are not likely, at all, to become otherwise. Words from the neurologist, not me.

So, there are many comforting answers to your troubling symptoms out there and most of them support, "No, it is not ALS".

We have a tendency to get frightened therefore want to qualify that fright with reasons. When the "reasons" later become unfounded by highly trained, highly skilled, highly practiced, highly respected neurologist, its time to let them go.

Being told you don't have something you've convinced yourself you have can be difficult to handle if only because we don't like to be wrong. Besides, if you've already told your whole world you have something that you wind up not having, you're thinking you now look pretty silly/stupid (and you very well may). But, get over it; life must go on and pretty soon people forget about it and in years to come, you may even laugh at the whole episode in retrospect.

These are just some thoughts from a guy who just came back from the neuro, assured he doesn't have an MND and can now breathe easier.

Zaphoon
 
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Al

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Thanks for that Zaphoon. We have a few here this week that should read and heed this.

AL.
 

jennibf

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This is excellent and would be a great post to save at the top!
 

BethU

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A great public service, Kim. I hope it is read and saves a lot of people unnecessary anxiety.

Well done!
 

rose

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Kim, what a great post! Maybe Al will make this into a "sticky". I am so relieved for you, (and we just know each other through this forum, I can only imagine how happy your wife and family must be). I do hope that you continue seeking a diagnosis and are able to completely regain the "old you" back again. :smile: Maybe the process will be easier without this hanging over you all of the time.
 

Al

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OK Zaph, I'll stick it to you. LOL

AL.
 

brendapals

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Zaphoon
Beautifully written!
brenda
 

BethU

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The thing I have started to worry about is this: Many of us are working hard to try to increase the public's awareness of ALS. And rightly so, as that will be a big help in getting more funding for research, etc.

BUT ... if we manage to make 10 million more people aware of ALS, that means that 5 million of them will immediately decide they've got it. Is this forum up to handling that volume?

Wright ... you'd better quit your day job ... :)
 

crystalkk

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Beth,

You nailed it on the head, people twitched for years and never worried. Now it seems the more people are
aware of it as a symptom of ALS everyone is worried obout it.
 

trying to stay positive

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Zaphoon,
I just saw this thread. I'm so happy to hear the news! Hope you'll still want to stick around here!
 

suzannj

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Hi Zaphoon! (Sorry, I just can't manage to call you Kim! Your fault! LOL)
CONGRATULATIONS!
Awesome post, well-worded as always, and you definitely deserve Al sticking it to you! :)
Suzann
 

awieleba

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Z~

I am happy for you that you have found some peace with all this. I hope you help nervous un-diagnosis!
I am trying to follow your example.......

april
 

happy

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WOOHOO......dance like Everybody is watching!
 

MtPockets

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Now this is the kind of post I like to read. Good luck my friend.
 

planningguy

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Great post and great news. Thank you for your optimism and eloquence.

Robert
 
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