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tkenny

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Forgive my grammar and spelling, I had a terrible sleep last night.

I've had muscle twitching all my life from what I can remember. It wasn't all the time but once in a while, perhaps once a month or so and for as far back as I can remember. I'm now 35. One time at work (work in a large unlevel yard with which isn't exactly condusive to walking properly) I tripped over either a rock or my feet. That was perhaps 8 months ago. I may have tripped coming up the stairs from my basement before too over the last year. Never any muscle cramping.

This last saturday was the beginning of my issues with suspected ALS. I was at Dimsum for brunch and noticed my right hand was shaking while holding the chopsticks. There was some perceived weakness in my arm which was most likey causing the shaking. Other then that I felt fine. Sunday rolls around and my wife and I did about 8 hours of hard yard work (new flower bed, some grass cutting and edging) I was exausted. Monday, Tuesday and Wednesday were good. No lack of appetite, slept well at night and everything "seemed" normal.

Then comes Thursday...

Woke up thursday morning very fatigued and with "perceived" weakness over my whole body and with zero appetite. Thursday was going to be a busy day at work and after. My wife was having Knee surgury that day so I had to pick her up. I left work at 12 to go see my family doctor about an unrelated case of ringworm and to ask him about ALS. As suspected, I got the run around about it. I booked a complete physical for this Monday coming up and will discuss further with him then.

Friday, Saturday and this morning I still have a general feeling of weakness over my whole body and I have yet to regain my appetite. I'm guessing that i've probably lost over 10+ solid pounds in the last week. There seems to be tightness in my calfs but as of yet no painfull cramps. No trouble swallowing and I feel my voice is normal. I can't really tell if I'm having many muscle twitches, maybe the odd one here or there but nothing to write home about.

I'm concerned, I'm young and i'm scared to death of dying.
 

boxer22

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tkenny said:
Forgive my grammar and spelling, I had a terrible sleep last night.

I've had muscle twitching all my life from what I can remember. It wasn't all the time but once in a while, perhaps once a month or so and for as far back as I can remember. I'm now 35. One time at work (work in a large unlevel yard with which isn't exactly condusive to walking properly) I tripped over either a rock or my feet. That was perhaps 8 months ago. I may have tripped coming up the stairs from my basement before too over the last year. Never any muscle cramping.

This last saturday was the beginning of my issues with suspected ALS. I was at Dimsum for brunch and noticed my right hand was shaking while holding the chopsticks. There was some perceived weakness in my arm which was most likey causing the shaking. Other then that I felt fine. Sunday rolls around and my wife and I did about 8 hours of hard yard work (new flower bed, some grass cutting and edging) I was exausted. Monday, Tuesday and Wednesday were good. No lack of appetite, slept well at night and everything "seemed" normal.

Then comes Thursday...

Woke up thursday morning very fatigued and with "perceived" weakness over my whole body and with zero appetite. Thursday was going to be a busy day at work and after. My wife was having Knee surgury that day so I had to pick her up. I left work at 12 to go see my family doctor about an unrelated case of ringworm and to ask him about ALS. As suspected, I got the run around about it. I booked a complete physical for this Monday coming up and will discuss further with him then.

Friday, Saturday and this morning I still have a general feeling of weakness over my whole body and I have yet to regain my appetite. I'm guessing that i've probably lost over 10+ solid pounds in the last week. There seems to be tightness in my calfs but as of yet no painfull cramps. No trouble swallowing and I feel my voice is normal. I can't really tell if I'm having many muscle twitches, maybe the odd one here or there but nothing to write home about.

I'm concerned, I'm young and i'm scared to death of dying.


Hi, tkenny
I was scared just like you so i really do understand. I had what my doctor called "the golden test" to rule out als. From what the doctor who did the test told me, is that i had nothing like als and that the twiches are from stress and caffeine. But you dont have twiches? Thats good. Yes i think everyone has them once in a while, that is normal. I dont have als but i have never really heard of it causing a loss of appetite, could your loss of appetite be because you are just very worried? I think when people lose weight in als its because of muscle wasting and not eating enough because its harder for them to eat. I am not positive though maybe one of the pals will let you know about that. I also have days were i over all feel week, that really could be a lot of different things. I think weakness in only certain places would be more concerning? The best advice i could give you is to have the Nerve study and emg done so if you are fine you will feel so much better!
Ashley
 

tkenny

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Thx for the reply.

I didn't say I "don't" have twitching, I said that I don't have a whole lot of them. If someone who's been Dx'd could chime in and let us know how frequent and over how much of the body they have their twitches that would be helpful I think.

What I think is odd is that I've had a fantastic appetite right up to Wednesday night (spagetii dinner) and then wednesday onward nothing. I know I have to eat but I just can't bring myself to and when I do eat it has to be something relativly bland or I feel sick. Oatmeal, fruit, rice.. stuff like that. I still am drinking lots though.

Also, my manual dexterity seems a bit off too... Typing (proficient typer) seems ok but when I go to pick something up it just feels "off" a bit.

Thank you for your suggestions folks...
 

Al

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I agree with annemarie. Loss of appetite is not a usual symptom of ALS unless it is related to worrying about it. My twitching started in 1 calf and took a couple of months to spread to the other one and months to move elsewhere. Sounds like a bug to me too. But we're not doctors either.
AL.
 

tkenny

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Al and Annmarie and Ashly, thank you for your insight.

Al, can you give me an example of how long twiching would go on for? a couple twitches, a few twitches, go on for 15 min at a time? One spot one week then a different spot the next time frame?

I am having some twitching but it's nothing very long, perhaps 3 or 4 twitches then nothing. And it is in random places all over the body in my estimation.

I've narrowed the majority of the weakness to my right side and especially my right leg. Arm not so much now but it's still there. And there is still general weakness, soreness, tiredness if you will, all over.

Thank you all so very much. I have an appointment with my family doctor today at 5 PM. Blood work was all done on friday so I dont' think it'll be back in time for the appointment today.
 

brooksea

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tkenny,

This doesn't sound like ALS. Twitching starts in a group of muscles and continues until there is no more muscle to twitch. This twitching can spread to new muscle groups and will continue twitching until that group also atrophies or wastes. There is not a little twitch here and a little twitch there for even a few moments. This twitching is from motor neurons
that are exciting the muscles. These motor neurons are fouling up the signals to the muscles.

As to loss of appetite: Depression and extreme anxiety in having been diagnosed with ALS can really bring on a huge loss of appetite in a PAL and a CAL. Otherwise, like AL and Annmarie said swallowing and chewing issues would be a cause.

Hope you find a solution to what's ailin ya!

CJ
 

Al

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Once the twitching started in a muscle they went on for 24/7. The dead ones don't twitch any more and that's atrophy personified.
AL.
 

tkenny

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I thought I would update ya'll.

I've seen an internal medicine specialist who has scheduled me for an brain MRI. I'm considering cancelling it and asking him to get me a consult with an ALS clinic ASAP.

Over the last 2 weeks my symptoms have evolved. I am now sluring words and my speech is not as smooth and flowing as it was even 1 month ago.
Saliva production has increased and I find myself with a wet spot on my pillow every morning but only for the last week or so. Swallowing issues are becoming more pronounced. Muscle twitching frequency as also increased. These are all documneted changes and are definatly not in my head. Constipation is also on the menu for the last week or so.

Couple all this with a 15 pound weight loss, weakness and muscle twitches over the last month and I can really only come up with one diagnoses.. Some sort of NMD, and probable ALS. It's not like im a doctor but we all know our bodies and something is terribley wrong with mine.

Take care everyone.
 

lhagsjr

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dont cancel it. u need to go through all these tests first or they wont even take u as a patient...
 

vmd

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When you say the speech and swallowing changes are "documented changes," do you mean a health care provider has noticed these changes? I ask because, anxiety may also cause us to overly worry about our speech and swallowing. I'll pray that your symptoms resolve soon.
 

tkenny

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vmd said:
When you say the speech and swallowing changes are "documented changes," do you mean a health care provider has noticed these changes? I ask because, anxiety may also cause us to overly worry about our speech and swallowing. I'll pray that your symptoms resolve soon.

Naw, I mean documented by me. I'm keeping a log.

I to hang on to hope but it's fading fast. Not sure I can chalk it up to anxiety while I'm sleeping which is when I'm getting the wet spot on my pillow. And like I've said earlier, i've never drooled in my sleep before.

I'm only 35, this can't happen to me. ;)
 

Jamiet

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tkenny,

alot of us are young here. it sucks

You need to call an ALS clinic yourself. You can find htem on the MDA website. They are the experts. You don't need a recommendation.

take care,

jamie
 

tkenny

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Up here in Canada, from what I understand, you need a referal.
 

Al

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You need a referral in Ontario and probably do in Alberta as well.
AL.
 
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