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pacman1

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Greetings,

I was wondering if my symptoms of abnormal arm fatigue and fasciculations, both of which are symptoms that ALSA mention as early symptoms of ALS, are consistent with those of a patient with ALS. I'm a 26 year old male about to get my masters in statistics on Saturday, :)!

I'll try to make my story succinct, but it may be tough...

I'll start with this (it may be unrelated), in December 2013 I saw a neurologist after recurring bouts of dizziness, cramps, tingling, and numbness. I had a brain MRI with contrast to check for MS and it came back clean. The symptoms later subsided and resurfaced a couple times since then. I realize these aren't symptoms of ALS but its a little background that may be useful.

In August I started getting random twitches throughout my entire body. Pretty much anywhere you could name I've had them. Some "hot spots" are the sides of my eyes, mouth area, and upper arms. A couple months later (beginning October) I noticed that my arms would get fatigued and burn when I woke up and checked my email/news laying bed after about 5 to 10 min. I have been doing this for a while and never noticed this. This continued for a bit with no other abnormalities. A few weeks after I started noticing that holding my phone while driving, typing for long periods of time, cooking, or sitting at a desk for a while caused bilateral proximal arm tiredness. It seems to be perfectly symmetrical across my upper body and no distal symptoms have appeared. This continues to this day and can be alleviated by some rest. I also notice (may be hyper awareness now that I am anxious about my health) my arm muscles get that feeling of soreness like I just worked out rather easily. For example when I push on them I feel pain but after some rest they feel better.

I fully understand that ALS is about muscles failing and not sensory issues but could my symptoms be due to other muscles failing and other ones picking up their slack? In the AboutBFS forums these are symptoms of BFS but they state that the fatigue goes away in a few day. Mine hasn't gone away in weeks.

Another bit of advice I am asking is that, I have set up an appointment with a neurologist at the Cleveland Clinic in a few weeks. Is there any advice you can give as to what I can ask or expect to help alleviate the anxiety I am experiencing over this?

This is a terrible disease and I feel for anyone who has it and is reading this message. I will be donating what I can to ALSA for your help on this issue, unless there is a more preferred charity. Thank you.
 
statistically speaking you do NOT have ANY ALS symptoms.

Holding your phone whilst driving? THAT is going to kill you.
 
Thanks for the response Tillie.

I knew I'd get that response :oops:.

While I'm very sorry that you are even on this site I've read a lot of your responses on here and you've been very informative and helpful to us worriers. Have a good day.
 
Pacman, you do not have ALS or anything like it.

Unfortunately, many websites have listed "every-damn-thing" as a symptom of ALS. However, as one quite intimately familiar with the disease, I can assure you that Dr Google is a quack.

dizziness, cramps, tingling, and numbness...aren't symptoms of ALS >>> you're right.

twitches throughout entire body >>> that's not the way twitches occur in ALS.

could my symptoms be due to other muscles failing and other ones picking up their slack? >>> logical thought. But again, it doesn't work that way in ALS. In ALS, motor nerves are destroyed so that the muscle never gets the signal telling it to contract. Sometimes that muscles will twitch as the nerve tries to recruit alternate pathways. Then the next nerve is destroyed, and the next, proceeding up the body from the foot in serial fashion.

If your GP thinks you must see a neurologist, then go. But don't worry about ALS.
 
Certainly does not ring any ALS bells with me either.
For your appointment
Prepare a concise history of your symptoms
I would ask what do you think this is? Do I need any tests? If this is not a primarily neurological issue do you suggest another avenue to explore? It is fair to say " I have been scared about ALS" but I would wait until the neuro has given the rest of their opinion. You don't want the appointment to be a do I have ALS - no. You want it to be what is wrong with me and if you don't know how do I find out? Once ALS is being discussed if it is going to haunt you you can say I believe what you say but can you please explain why it is not so I can stop being scared?
Thank you for saying you will make a donation. We all have our favorite organizations. I will comment on ALSa if you have a wish that the money go to a particular part of the cause you must designate it ( for research as an example)
Other options
Northeastern ALS consortium ( NEALS) or ALSTDI for research
ALS guardian angels for direct patient support
 
Thank you for your responses. Perhaps it's the stress of grad school and starting a real life grown up job and moving that is accentuating my symptoms. I'll post what the neuro says when I go for reference to future Googlera with similar symptoms.

Thanks again. I'll make a donation to a research fund that is approved for a match by my employer.
 
Muscle soreness, fatigue and bodywide twitching is all what I had too when I first visited this forum. A neck MRI revealed cervical spine issues that were messing with the nerves that deal with my upper arms, which caused the twitching, discomfort and soreness/achyness. Get an EMG if you would want to put yourself at ease, but as a health anxiety sufferer myself, it is probably best to stay off of here until you get further answers.

Otherwise, you will feel the wrath of Tillie :)
 
Hi Pacman, sorry to hear about your symptoms.

I have developed a hypothesis which is strange yet "statistically significant". Many people in their 20-30s have some kind parathesia (due to stress etc.). When they google their symptoms they find MS at first. Then he runs to a neuro who gives an MRI and generally it comes back normal. Then partially relieved, he looks for ALS (or the disease Stephen Hawking has) . Suddenly after few days his muscle starts fasciculating (widespread). And it continues for 2-3 EMGs , 5-6 neuro exam and uncountable number of visits to GP.

Your story is very like me (and many others). So, I started to believe that mind plays very strange game and thinking of fasciculating ACTUALLY causes fasciculation in anxious stricken souls. Though I still have some spells of ALS fear every week, but now I gradually learning the art to deal/live with it.

By the way, I am doing PhD in stats.
 
sm_bs, as you wrote above, ("By the way, I am doing PhD in stats.") That's great... but not here. You have been assured by very knowledgeable members here you do not have ALS.
I believe Atsugi explained to you that your lingering around this Forum is non productive. In pursuing a PhD I'm sure you would have comprehension of such point, your inappropriate position here and commentary.

PS. Your philosophy is trite and redundant.
 
Just my two cents and to give you some additional positive feedback away from ALS

This is for DIHALS under 30:

The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.

So let's do some numbers:

2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).

Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".

And for those concerned with Bulbar Onset, multiply those chances by 5 since only 20 percent of ALS cases are Bulbar. So now your chances are 1 in 5 million.
 
First of all I am sorry that you've anxiety distracting you from school and all that you having going on in life. It is never easy to have one's body sending confusing unusual messages. You're wise to do some research for your own knowledge; it will make your upcoming appt. that much less stressful and you'll know as much as you can in order to exhaust the physician's time. For me that was important. I wanted to have every last question answered while with a proper Neurologist.
Take your tiime and write out your concerns. I did. I went to several physicians without any idea that ALS would be the ultimate diagnoses. I was in my first year of PhD studies and trying to continue running and biking and essentially pushing myself too hard. Fatigue and fasciculations were among my presenting symptoms. I had never felt that fatigued and my entire body was zapping and twitching (initially randomly visible and then some areas twitched for days and still do). At that time my mantra was "I feel electrified as though I am plugged into a wall outlet." At the same time my right leg and left arm tired more easily. In the beginning those two limbs simply tired out abruptly. These personal symptoms I share because I know the frustration of knowing something, SOMEthing, is going on whether stress related or situationally (using phone or pinching nerve while in some positions) or pathological. You are your own advocate in all things.
You sound like an intelligent person so arm yourself with all that you can and take charge of your healthcare. It may take one visit to the neurologist to relieve your mind or to be referred to some other specialty or perhaps a good massage therapist working you over.
None of what I'm writing is meant to be patronising. I had overlapping symptoms and some were unrelated to ALS and there were some red-herring diagnosis along the way. Ultimately we all manifest ALS in a different "pattern" yet with mostly clearly knowable symptoms. Do post back after your appt. We can not know your situation beyond what you write but a physician can do some quick tests and conclude that yes, you have SOMEthing going on or not... and time will tell. Do not be surprised if some of the tests happen so fast that you wonder if they truly put in an effort. LOL I can assure you that they can do them quickly and efficiently. In my case a Mayo Clinic Neurologist spent three days with me doing unusual tests beyond what my initial OHSU Portland Neuro team performed... all concluded that there was something quite wrong but I did not fit into a classically defined case. I was never turned away, but I did have to push for advocates within. I looked fine to others (friends)and that was distractingly frustrating. Over time more symptoms developed and a few no longer fueled my obsessive pursuit of a diagnosis because they were indirect effects of spasticity. Unfortunately, an ALS diagnosed did come and worse, it came after chemotherapy. I read every journal article I could and still do. I was able to see thee Neurologist that wrote and studied on the chemotherapy treatment cohort that related to my case. I take some umbrage in knowing I listened to all yet put it into context as best as I could so that I won't likely look back and regret having looked under every stone.
This is a long response to offer insight into the process that I underwent. I joked that I had a brain tumour for two years before I went to a physician. Close! You must find your own method to settle your mind; disease or not. Nobody will soothe your nerves better than you so in the meantime do everything you can to treat yourself as you deserve; aim for the usuals like sound sleep and eating well and go for a massage or three. No matter what the outcome you'll have started living as well as possible today and what else is there? And do keep a journal for your benefit and your physician's. Whatever the outcome continue to maintain a full life. "To thine ownself be true." -and all that jazz. Keep up your humour if you can and I hope you're simply run down from studies!
 
TO ALL CONCERNED:

It's difficult for paralyzed people with ALS to read and respond to questions. It's also time consuming for their caregivers, who are probably the busiest people in the world with the least amount of sleep. Further, ALS is a complex and highly misunderstood disease. Nearly no one, even most doctors, understands it as well as the people who actually have it.

For these reasons, we request that if you're not a PALS or a CALS, you leave the forum as soon as your questions are answered. This makes it possible for us to answer the next person's questions as best we can.
 
As if my initial response weren't long enough. I meant to share that cramping was a seriously debilitating issue for about two years. Spasticity was and remains a problem and that may be the root of my cramps or it was because of over exerting myself physically with weakening muscles; over compensatory strain. I try to keep in mind that the causes are not always knowable and the fix or prevention is the goal. Thus I learned to temper my ambition when the cost would likely negate the reward. Regardless of what you have going on you might consider taking a break from pushing yourself. Your body and or mind is telling you something. Cramping, fatigue, fasciculations, all part of my early symptoms and though my muscles are weakened and the cramping less painful, I do still get them. A relief that they're fading, ironically. The first specialist I saw wrote ALS in his notes and did not say so to me as it was not his area I suppose. My GP shared that with me because he knew I wanted transparency and I would not jump off of a bridge... until further neuro testing I kept it in the back of my mind though it did ring true. The journey some of us have had is quite a story and sometimes anything but similar to anothers.
Motor on and forge ahead.
 
Runner, first year PhD in what direction?

Also, you wrote, ("Spasticity was and remains a problem and that may be the root of my cramps or it was because of over exerting myself physically with weakening muscles..") ?

And, you wrote, ("Cramping, fatigue, fasciculations, all part of my early symptoms and though my muscles are weakened and the cramping less painful, I do still get them. A relief that they're fading, ironically.") ?

We've had numerous discussions here concerning the progression of muscle weakness vs failure.
 
Clear, Urban Studies and Public Affairs'; in Economics of the City and in Transportation. Ironically, specialising in promoting ease of mobility for all in the urban environment (pedestrians, elderly and disabled). HA! I learned that economics, like statistics are quite often subjectively applied to suit politics and opinion. Context is everything.

Pacman, I hope you have dodged the ALS bullet.
 
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