Status
Not open for further replies.

wesker17

Member
Joined
Sep 6, 2014
Messages
18
Reason
Learn about ALS
Country
US
State
OR
City
Eugene
Hello everyone and thank you for your time. It's been about 6 months since I first started experiencing odd symptoms and i'd like to share them with you because i'm officially worried that I might have a MND like ALS.

I'm a 32 year old white male in good health. In the beginning(6 mos ago), I would be awakened at night several times thinking that I had to urinate and nothing would be there. It was not an urgency to pee, but the feeling that my bladder is nearing full and needs to be relieved. This got progressively worse quickly with me basically needing a urinal next to the bed because walking up and down the hallway 20 times a night to the bathroom was wearing on the family members trying to sleep; this continues to get more frequent. At first I thought I had diabetes and so I was tested which was negative. Soon after needing a urinal, the twitching began. Nonstop in my legs mainly right calf in the same spot that have not stopped as I write this; there has been some slight variation in the location of the twitching in my legs but mostly the twitching has been in the same spots on both legs. Around the same time I realized the twitching wasn't going to pass, I had started getting weakness in my left hand. My hand would get fatigued very quickly after doing light things like driving to the store or typing an email. I began to get very concerned especially when the spot that was twitching nonstop in my calf balled itself into a cramp one night that lasted over 24 hours. No matter what I did I could not get the muscle to relax.

I didn't think it could get any worse until a couple nights ago out of nowhere I felt this overwhelming tiredness in my tongue. I couldn't speak another word until I rested it. This has made it to where I need to choose my words wisely now because I will get fatigued in speaking very quickly. This is about the time I heard about ALS and began reading. I've taken the time to read the stickies here as well as watch 'The ABC's of ALS' and if I wasn't fearful before, I certainly am now because is seems like my symptoms line up perfectly with an MND. Especially when the ABC's mentioned false urgency to urinate, fasciculations, weakness, among others.

I read the stickies and found the information very helpful and informative however, I now feel compelled to consult this community if you all would be so kind as to weigh in on my symptoms. I've read in several places here that the general consensus is that twitching happens on muscles dying and there is usually a weakness or atrophy before twitching occurs; but i've also read a couple stories mentioning twitching as the first symptom. I realize that this isn't a replacement for medical advice. Help!
 
How does one rest a tongue you wag? Methinks you think you are posting on the hoot and holler forum. I'd write more but I'm all tuckered out. You would have been after 1 paragraph IF you had AlS. Gotta go. Gotta pee.
 
I'm deeply sorry if I have offended you by coming here.
 
No you aren't and don't play that card. Just be happy I commented first and it was made by someone with patience.
 
You need to go back to your physician as you know.
You report symptoms in your legs,hand, tongue and bladder. If you had such an aggressive form of ALS that all those places were affected in 6 months you would be severely disabled. As you know there is a difference between clinical weakness and feeling weak, twitches can be anything as can bladder spasticity.
Make an appointment with your physician. If he or she finds upper or lower motor neuron signs come back and report the findings and we can talk more but to me it does not seem like my experiences with ALS
 
Wesker17 asked me to weigh in, so I double checked his symptoms.

This is not any ALS I have ever heard of. I have no doubt Nikki's analysis is the best.

If he thinks he sees himself in the ABCs of ALS, then I wonder about the video.
 
Thank you all for you time and replying. In part 2 of 'ABC's' she mentions the urgency to urinate, as well as fasciculations, and muscle weakness. The official ALS association site states "muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech,
swallowing or breathing" as the first bullet point for symptoms as well as twitching. The site and the videos both imply that early signs are generally a mixed bag of different combinations of limbs/muscles BUT when you take the time to research this forum, the consensus is that it begins in an isolated place and slowly spreads from that location throughout the body without occurring elsewhere simultaneously NOR does it begin sporadically in multiple places. So my question is: What's the right answer?
 
People often find confusion between the "official" online pamphlets and videos and bullet points, and the unofficial comments of real-life people. In fact, there is some difference in experience among the PALS on this forum.

I suspect the official bullet points are including every possible symptom that's ever been reported, so as not to leave anything out. Sometimes I think the official view is so inclusive that it is not actually defining.

Having read, however, your particular story, it really doesn't sound like ALS at all. The two points that would seem to be the strongest evidence, weakness in the hands after typing, and the calf cramps, actually point away from ALS, according to my knowledge.

First, although there are dozens of muscles in the hands that can become paralyzed, thus making the whole hand weak overall, the concept of "becoming fatigued" just doesn't jibe with my knowledge. Once a nerve is stricken by ALS, the associated muscle doesn't work at all. It goes limp; it doesn't get tired. It just is always paralyzed, limp and useless. It doesn't get tired after use; it just can't be used.

Second, cramps, while mentioned in the official literature, aren't a very early sign of ALS in my knowledge. A cramp is a muscle that contracts too tightly. Of course, ALS is the opposite; the muscle can't contract at all. I suspect that the cramps mentioned in the literature are a form of over-compensation for other muscles that are not carrying their load.

Nikki said it best--if your hands and feet and bladder and tongue were becoming paralyzed all at once, it would be such an aggressive disease that you would be already bedridden and half dead (my words). If you're still concerned, see your doctor to find out what the problem(s) are. I really don't see ALS in your future.

EDIT TO ADD: I almost forgot your final question. Who to believe? Well, if I thought I had a terminal disease, I would spare no expense and immediately fly to see a team of world-class specialists, then go to another set of world-class specialists for a second opinion. That's who I would believe.
 
I definitely agree about the literature floating around on the internet right now. It's worded too generally while also lacking any details about HOW the symptoms progess such as: atrophy BEFORE twitching. It really seems to me like ALS/MND has become THE hypochondriac's dream of diseases. As far as your input on cramps: There's a video on youtube of a man that took the time to document his symptoms all the way from diagnosis until death. I watched every video and mourned a little bit more for him each video. He mentions in his first video (right after diagnosis) that 'show stopping cramps that lasted for hours' were part of his first symptoms. Just some food for thought: ALS Diagnosis Process - YouTube
 
Replying to your edit: If I had the money I certainly would however I'm a single father that works a low paying job and gets food stamps. My only hope is the mercy of the almighty Medi-cal. Now that's scary.
 
I just realized my last post said "requires mod approval". That's strange.
 
Mod approval is needed on many posts. It's a weird thing in the software. Don't worry about it. Mine get modded all the time.
 
The symptoms for ebola are:
High fever.
Headache.
Joint and muscle aches.
Sore throat.
Weakness.
Stomach pain.
Lack of appetite
My guess is that at some point in our lives we all had those symptoms--even all at the same time. Does that mean we all survived ebola? Hardly!

Having symptoms of a disease does not mean you have the disease. Doctors are trained to recognize the disease, its patterns, other symptoms that contraindicate the disease, other mimic diseases that must be included in the differential and then to eliminate every disease they can through clinical exams, blood tests, MRIs, NCSs, EMGs and other tests until they arrive at a diagnosis. They do not just say, wow, you have two symptoms of ALS, so you have ALS.
 
>Mine get modded all the time.

:)

I have an xls with the evolving keys, but David and the mods would shoot me if I published it :)
 
There is a rather common connection between an overactive bladder and drinking less fluids. Most people with bladder issues drink less fluids in the evening, and some drink less all day.

Dehydration is well known to cause fatigue, twitching and cramps. I would recommend taking a fluid balancer and see if your cramp and fasics issues subside.

And, urine urgency and fasics can both be stress induced.

This does not sound at all like ALS or MND. Go back to your GP and explain your worries and get counselling for your health anxiety.
 
Status
Not open for further replies.
Back
Top