Please hear my story. I'm frightened!

[Desert Buckeye]

I'm shaking as I type this, literally and figuratively. I commend those on hear brave enough to share their own experiences with us. Thank you!
I am 32, female and I have had some strange things happening. They began about a month ago with tingling and numb finger/hands, toes/feet. Then came the exhaustion. Any daily activity caused my pulse to sky rocket and it was hard to catch my breath. My arms were so fatigued just doing laundry was difficult. Same for my thighs. Had extreme lower back pain as well. This went on for about two weeks. Toasted the end I began to feel a crawling sensation in my right calf. Then the twitching was showing up all over my body. Everywhere! I still have bouts of fatigue but it seems to come and go. My left arm and hand have never fully recovered. Not as strong as it used to be. I can still button shirts and stuff but it is stiffer and slower than my right hand. I have dropped a few things lately.

Twitches are what originally got me researching ALS. I also appear, although it was quite as obvious, to have some bulbar signs as well. I have had trouble pronouncing a few letters, have occasional trouble gettig food to go down my throat, I am always feelin likeucous is in my throat to the point that I try to pull stuff up and out of it. I succeed most of the time. My left side of my jaw is very tight and the top of my throat feels a little tight.
My biggest question is can the onset of bulbar ALS coincide with the limb type and/or is one month too short of time for there to be symptoms in my throat and limbs?

I had a clean MRI of my brain in the middle of all this. I see a rheumatologist next week because of a positive ANA. That 's all so far but I am so scared of this being ALS! What do you think? Thank you!

 

[laurel]

Did you have a flu, an infection or a virus prior to symptoms? It really sounds like post viral symptoms. Seeing the rheumatologist is a very good plan. Best of luck to you.
Laurel

 

[Desert Buckeye]

Forgot to mention that the fasciculations are still happening all day long. I will have some twitches in a calf and it will stop, then an arm for a few twitches, then it will stop and eventually show up somehwere else. I don't tend to notice it when I'm moving around a lot....

 

[Desert Buckeye]

Oh Laurel, thank you for responding from cyber space. I apprectiate your time. My boys and my husband all had some sort of stomach bug a little after my inital tingling symptoms. I did not feel overly flu-ish but very well could have been. No fever though. Still experience exhaustion randomly but pretty much a few times weekly.

 

[alex scared]

hey db . . Hope you are as well as can be expected . . The first thing that struck me listening to your symptoms was post viral . . . Like laurel says it fits . Secondly please realise that most if not all what you have described does not sound like a motor neuron disease . . That not so say that something is not happening but it could be any thing from a massive list . From my admittedly limited knowledge als or mnd has the the hallmark of relentless progressive weakness starting in one part of the body ( ie . . An arm or leg ) and moving on through that limb . -Twitching / fasciculation has a bad name . . But literally hundreds of conditions can be attributed to it . ( including calcium deficicency ,anxiety dehydration ) your are also on the right side of age regarding mnd / als . . Hope some of this sets your mind at ease . . I wish you good luck and god bless . . . . Alex

 

[Desert Buckeye]

Thank you! Let me clarify that the tingling and numbness occured gradually over about a week and a half before I felt any of the exhaustion and muscle fatigue. Not sure if that makes a difference. And just today I have experienced twitching longer and more frequent twitching in my left thigh with weak knees and less stability. Usually it's just here for a second, there for a few seconds, etc. I am eager to attribute the twitching to something all together and hope this is all less fatally serious than ALS. I appreciate your insight.

 

[trfogey]

Thank you! Let me clarify that the tingling and numbness occured gradually over about a week and a half before I felt any of the exhaustion and muscle fatigue. Not sure if that makes a difference. And just today I have experienced twitching longer and more frequent twitching in my left thigh with weak knees and less stability. Usually it's just here for a second, there for a few seconds, etc. I am eager to attribute the twitching to something all together and hope this is all less fatally serious than ALS. I appreciate your insight.

You should never have attributed your symptoms to ALS to start with.

• The type of twitching you have described is nothing like the twitches found in early ALS (which are so tiny and so mild that they are detected by sight rather than by being felt).
  
• The sensory symptoms and sudden onset of "exhaustion" are not ALS symptoms. There is a difference between fatigue and weakness, which are often confused by people who look up twitching on the Internet. The weakness that comes with ALS is permanent and does not go away with rest. Getting tired in the way you describe is called reduced stamina or exercise intolerance, not weakness.
  
• Finally, what you are calling bulbar "signs" don't bear any resemblance to the onset of bulbar ALS, but sound very much like the globus that some people get when they are anxious, and the pain and stiffness in your jaw is probably a result of grinding your teeth as you misinform yourself more and more about a disease that you don't understand, don't have, and likely never will have -- ever.

Your best bet for learning about what might be troubling you is a website called a b o u t B F S dot c o m. On that site, you'll find a whole bunch of people that twitch like you do, get fatigued like you, and have the same throat complaints that you do. Give that site a try and put ALS out of your mind.

 

[Desert Buckeye]

It is true that I may have no right to be on this website to begin with. Thank you for your tactful bluntness, sincerely!

 

[trfogey]

It's not a question of having a right to be here. Anyone who uses G o o g l e to look up muscle twitching is going to end up here pretty quick. Mostly, that's because we've had lots of people ask the same questions you did, over and over and over again. You might try reading some of the answers that they got before you ask any "new" questions.