exhibiting a bunch of odd symptoms. scared.

[stymied]

Here is a timeline of what I've been experiencing.

Sept 7th: moderate to severe pain and cramping in shoulders and upper back that went on for 3 or 4 days. The night of September 7th, while in bed, is when I worst noticed occasional twitching in various parts of the body -legs, back arms. The twitching has spread further every day and has increased in intensity.

Early October: a weird buzzing feeling while stand still that start at the knee and went upward in intervals of roughly 5 seconds. Buzz...buzz....buzz... My front part of my right leg goes numb. GP determines this to not be true numbness. The buzzing lasts about a week. The numb patch shrinks to about the size of a silver dollar just above the knee. It might not be "true numbness" but when I run something over it, there is clearly a different sensation that feels like numbness to me.

Mid October: a lot of discomfort in my forearms and hands. Not sure it was cramping , but it prompted me to continuously massage my arms and crack my knuckles. This happens on and off to present day.

Early November: My legs get in on the action and now are by far most bothersome. They feel week and fatigued first thing in the morning. Left feels weaker than the right. Since I've been examining my legs, I feel as though the muscle just above the knee on my left leg has receded a bit from the knee and has a visible "dent." I still do my job which is somewhat labor intensive but there is a noticeable difference in the ease at which I do it. At night, my left leg has a vibrating sensation. Not a visible tremor, more like my leg is resting on a cellphone that's vibrating.

Nov 25th: had an appointment with a neuro who conducted a strength test by hand and said I felt very strong at all points. I did take that as good news, but she really had no previous tests to compare it to. She said my reflexes were all fine within normal range. The only thing I took note of was a lack of any response to the Babinski. Walked on heels, balls of feet, etc. I obviously expressed my concerns and she said "I don't think you have ALS." But she did set me up for an EMG and said she'd be testing 4 areas. That's in 2 weeks.

Over the last 2 days, I've been doing a weak cough a lot after eating and/or drinking fluids. I've also felt twitching in my neck that i can't tell if its my neck or my throat. Tongue strength seems strong but looks a little less smooth than it once did. Haven't noticed any speech problems but do hear this low grade gargling sound in my lower throat while drinking.

Outside of the left leg, everything I'm experiencing seems bilateral and widespread. When my hands feels weird , its both hands, twitching is everywhere. I am not a hypochondriac and I had little to no stress in my life when this all started. Blood work hasnt shown anything unusual.

I wanted to know what you guys think of all this. I really appreciate and thank anybody who takes the time to read and respond to this. Like most people exhibiting strange symptoms, i am beside myself with worry. Thank you.

 

[stymied]

I have also been waking up with weird feelings in my hands. Sometimes, its the rights, sometimes the left, sometimes both. It's not the "falling asleep" feeling. It's like that in feeling but I can move the fingers. It fades in a matter of seconds. That has been happening for the last month or so. It never happened before.

 

[affected]

Honestly, you've been active on another thread, and the sticky says all your symptoms point away from ALS AND a neurologist tests you (strength tests DO NOT need prior tests for them to interpret) and says you don't have ALS.

YET, you feel the need to write it all down for us to answer?

PLEASE just go and wait it out and work with your doctors. You have no ALS symptoms and they will work with you to solve this. We've done all we can do for you now.

I wish you all the best.

 

[skipper66]

Yes, please listen to Tillie. There isn't anymore really that we can do for you here. Best of luck to you, Kim

 

[Mediasmart]

a weak cough? a weak cough? oh the humanity. hide the kids. bury the silver.

go away.

 

[ECpara]

The amount of symptoms you have are staggering. But they don't sound like ALS. At all. To be quite honest (I mentioned this on another thread), PALS who are first diagnosed have only one or few symptoms to start out. A muscle may be affected such as having a hard time lifting one arm, or maybe just mild slurring of speech, or maybe a thumb doesn't work quite right. ALS is not an "all over" thing until it's in the very advanced stages. You talk about your hands, knees, throat, tongue, neck, left leg, and back of arms. ALS does not present this way. And buzzing and vibrations? Never heard of that before. I'm certain your EMG will come back normal. Good luck.

 

[Clearwater AL]

Stymied, as you wrote, ("I am not a hypochondriac...")

You're the finest example of denial I've read in a long time.

What in the wide world of sports does cracking your knuckles have to do with ALS?

Then you wrote, ("Like most people exhibiting strange symptoms, i am beside myself with worry.") Your symptoms aren't strange... it's anxiety and hypochondria. Cell phone vibratiing and all. Oh yea, the "Buzz - buzz - buzz" too. That was a good one.

Then you wrote, ("Like most people exhibiting strange symptoms, i am beside myself with worry.") Your symptoms aren't strange... it's anxiety and hypochondria. Cell phone vibratiing and all. Oh yea, the "Buzz - buzz - buzz" too. That was a good one! Your leg was getting a busy signal from your brain.

Finally... a first in symptoms noted by an anxiety patient besides themselves with worry...
(" Haven't noticed any speech problems but do hear this low grade gargling sound in my lower throat while drinking.")

I think, my opinion, the neuro you saw is a quack who wouldn't recognize anxiety and psychosomatic symptoms if it was high speed train that knocked her into the middle of next week.

From all you've written, if by the wildest of wildest chance you were ever diagnosed with ALS... you'd be the first complete body wide ALS onset ever noted.

Finally - finally as you wrote, ("I wanted to know what you guys think of all this.")

There it is...

 

[stymied]

I thank you all for your responses, including the sarcastic and dismissive ones. Believe me, I've said those things to myself in the mirror, including "go away." I think what worries the DIHALS is that for every person who says that ALS doesn't present "that way", there's somebody right around the corner telling a story about their ALS presenting "that way." I've read the stickies. They're very well written and informative. Some stories I've read seem to contradict elements of those stickies. Maybe those are extreme outliers of an already rare disease. When I fly, I don't fear that the plane will crash. I just don't think about it. We know planes crash, but we also know the probability of it is so low its not worth worry. Maybe that's how I should approach these symptoms. I'm confident that all of you, as well as my neuro, know a lot more about this monster than I do, and you have stated you don't think it's ALS. I do have that EMG in 2 weeks and should just relax until then.

The stress issue: I have no doubt that my stress and anxiety of this, and the resulting poor sleep habits, have exacerbated whatever is going on. But I assure you that stress and anxiety are the result of the initial symptoms, not the cause.

As far as the response to my "weak cough", it was funny, but I notice a lot of subtle symptoms being dismissed on these forums (I'm not saying my baby cough shouldn't be dismissed). Doesn't everything start out somewhat subtle? If you have a softball sized tumor, it was once microscopic. It's not like you go to bed with not tumor and wake up with a softball sized one.

I'm sorry if I'm just another paranoid twitcher clogging up this forum. I thank everybody again for reading and responding.

Lastly, I hope everybody has a great Thanksgiving. Be well.

 

[Dusty7]

"Some stories I've read seem to contradict elements of those stickies."

Please PM with every story you find that contradicts the Sticky. We want the Sticky to be a s correct as possible.

 

[dalvin]

Dusty, my guess is that those " stories " are from dihals that really didn't have ALS

 

[affected]

Dusty stymied won't have PM rights ...

And I agree with Dalvin that the 'stories' are probably other DIHALS stories, of course those people will have screamed 'but it IS ALS' then never come back.

Also I find that people totally just read what they want or fear into anything (wizards first rule - people are stupid. they believe what they want to believe, or what they most fear to believe).
So someone reads Peter Frates story and says, see he started with twitching! But all they read was the word twitch or fasciculate, not any of the other accompanying symptoms he began with, not how he then progressed, and LEAP across the chasm to what they are experiencing and claim it's the same.

No matter what we tell people from our experience, they will ask for our opinion, then reject it as they know better.

And finally they have no respect for PALS in any way shape or form.

Whew, my filter must have been sent to the cleaner this morning ...

 

[stymied]

Wait a minute. I'm not rejecting anybody's opinions. I asked some questions and best tried to explain my symtpoms to you because I know you guys know better than I do. I read one account in these forums of a guy who was diagnosed. He said it started in his leg and that he actually climbed ladders and poles are work for a while until he no longer could. Who is this guy? I don't know. Is that story accurate? It's not for me to say. All I know is how I feel. You all basically think what I explained is not ALS. I appreciate your feedback. If I came across as disrespecting anybody, Ibapologize but that was certainly not my intent.

 

[stymied]

Poking around on the internet and and consulting Dr. Google are definitely big mistakes that I've made. It really does no good. It's the first thing I would say to somebody if they were acting like me. I think what freaks DIHALS out is stories like Steve Gleason. Obviosly, I'm not privy to every detail of the man's story. But in stories you come across online, it's says he first noticed odd twitching in his back and arm. That was followed by a story about Steve only being able to do 3 pull-ups on a low tree branch. Obviously to Steve, that was not a lot. It mentioned in an article that he did a 35 mile bike ride just before that pull-up incident. So it would seem that his weakness really creeped up on him. I think stories like that are what drives DIHALS into worry and panic. That's all I am trying to say. I am sorry if my posts bothered anybody. I am just sick with worry and came here for advice and knowledge. Maybe that was a mistake. I would like to say again that I deeply appreciate all of you who took the time to respond. I am sure you have better things to do with your time than to respond to my post. Again, thank you so much.

 

[Nikki J]

ALS is not curable. Some mimics are, some are at least treatable. It is correct to pursue other avenues if one has symptoms that are not explained. It is not the place of this board to offer extensive recommendations for medical testing. IBW if you have a curable condition and do not have ALS. You do not belong here. Other sites are more appropriate for your discussion. Please respect this Thank you

 

[Atsugi]

IBWMMPTTW: Your anti-doctor, I'm-smarter-than-anyone-else advice is not welcome. The people on this board are paralyzed and dying and have no time for your politicking. Please go have your anti-medical-establishment discussions elsewhere.