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Eighteen, concerned that I may have ALS/MND.

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Solipsism12

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First, let me start by saying that I am here due to symptoms that have been concerning me for almost month. They are new symptoms that have arisen from other symptoms that have been occurring for over three months now, starting at the end of November.

It all started when I had two bowls of soup, cold bottle of water. It left me with what I thought was a bad case of indigestion. It happens. It's even happening two other times in the past when I ate late at night and tried to lie down, those these cases were fairly far apart from each other in terms of time.

After that case of indigestion, I was struck with a case of constipation, hyperactivity (growling), and occasional pains that would be relieved if I made a bowel movement with the help of laxatives. I made sure to not use them for more than a few days.

I have these organic protein shakes that I began to use that contain probiotics, and they did quite a lot to ease the pain and the growling, and even helped regulate my movements somewhat. However in time, they became less and less effective and contributed to my constipation. Whenever I would have a full bowel movement, I'd notice discomfort in my lower left abdomen. Sometimes my stool would come out narrow.

Once I stopped taking those, I was hit with what seemed like Malabsorption. Large, bulky stool that floated and left me extremely exhausted after passing. Another similar case would occur, though the bowel movement was far more loose. I have had two or three cases of fecal incontinence, but I also do have hemorrhoids that the constipation possibly aggravated.

Now fast foward a week or two, the pain and obsessive growing in my GI tract would cease, though still constipated with one bowel movement a day, which is less than what I would do. Stool comes out in pebbles along with something that looks a bit wonky, but normal, sometimes more loose, but now I am granted with a twitch that began on the right side of my face near my nose. A few days later, I would notice twitching in my legs, and eventually my body. Shoulders, arms, legs, face, etc.

Soon symptoms became painful. My hands started to cramp, and pain would be present in my upper back thighs. Fortunately, both of these would eventually stop, and I still have muscle control and strength, though the twitching is still present. The only time the twitching seems to stop is when I engage the muscle (Walking, moving my arms).

The terrifying thought is this: "Well, I'm no longer feeling the stomach growling or pains, does this mean that the nerves in my large intestine are dying/dead and this disease decided to jump to my limbs next?"

I'm eighteen, live in a low income family and I can't afford medical attention. I'm looking into a job at the moment and the only thing I can do is hope nothing bad happens to me before I can get the money I need.

I hope that you lovely people could lend some insight. Thanks.
 

lgelb

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This has nothing to do with a nerve disease like ALS, Georgia. You may have irritable bowel syndrome or a similar condition, or simply anxiety that can cause these problems. And that kind of condition can lead to mineral imbalance that can cause twitching. Anxiety can cause/worsen it as well.

I am sure there is a free/sliding scale clinic in your area that can help with your anxiety and GI issues. While you are job-hunting, you may also be eligible for Medicaid if you are on your own. Do not hesitate to reach out to people you trust -- family, friends, teachers, etc., who care about you and they will probably have ideas, too. The good news is, you haven't presented any reason to fear a neurological disease.

Best,
Laurie
 

Solipsism12

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Thank you for your input on this situation. I should probably include two other things that have occurred. I also experienced pain in the back of my eyes when I moved them too far to the right or left, and the day later the twitching in my face started. The dull pain that occurred when moving my eyes too far to the right and left went away a few days later.

I also sometimes feel either pricking or the sensation of a a water droplet hitting my skin at times. I don't know if this particular symptom is due to anxiety or not, but it's definitely strange.

I really wish you and everyone else here the best of luck. Medical breakthroughs are always being made. Once I gain a stable footing I plan on donating to help fund research for ALS and other Neurological diseases. These sorts of things are just terrible, and there is much more that needs to be done.
 

Nikki J

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As Laurie says none of this is remotely related to ALS.

Try to take good care of yourself by eating a healthy diet and being physically active. If you haven’t graduated from high school yet I hope you are still in school. Are looking for a full time job or an after school one?
 

Solipsism12

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As Laurie says none of this is remotely related to ALS.

Try to take good care of yourself by eating a healthy diet and being physically active. If you haven’t graduated from high school yet I hope you are still in school. Are looking for a full time job or an after school one?

I am still in highschool and living with my family. Currently looking for a part time job.
 

Nikki J

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Good for you. Best of luck
 

Solipsism12

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Just one update. Would like your thoughts.

In my last post, "18, concerned that I might have ALS/MND", I discussed my symptoms and I thought I should include things that have happened prior, but possibly not related.

Last year, around the end of the winter I was hit with what I believe was a chronic lung infection. Coughed up thick mucus, and I maintained the cough for many months. If memory serves correctly, I was hit with what I believe was a indigestion attack during the late summer, burning across my abdomen after a meal during that night. The cough began to calm down quite significantly, I was hit with another indigestion attack weeks later, and the final one at the end of November. After that case of indigestion, I was struck with immediate constipation, hyperactive growling, and constipation.

I was never one to have serious GERD problems, and the time of which these indigestion attacks happened were quite infrequent. For the few weeks that followed, I thought it was just some sort of infection that I would get over it. I would pass narrow stools, and used laxatives in some cases. Using a probiotic protein shake, it seemed to improve the looks of my stool and ease the growling significantly. However, these would just eventually make me constipated more, and my stool would come out in shapes that would be less normal for me. If I had something that was reasonable size, I would be hit with discomfort in my lower abdomen.

Fast forward into January, I started using the protein shakes on and off, and whenever I stopped drinking them, it hit me with what I believe to be malabsorption. Large, light colored, bulky stool that would leave me feeling exhausted and having chills. This may have occurred three times before I decided to pick up digestive enzymes, assuming that something was not quite right with either my small bowel or pancreas. I took them for a few days.

During these few days my stool would come out in wonky looking golf ball shapes. A few days later I stopped taking them after I noticed that the area next to the right side of my nose began to twitch. I decided to stop taking them thinking that I was suffering some sort of side effect.

And then, the twitching spread throughout my body. Pain in my upper back thighs, sometimes it felt like it was traveling to the joint. I had cramping in my hands, and while it is less severe, I still feel twinges of pain. Pain the feet, calf, right bicep- It feels like it switches from one muscle to another.

I have not had any noticeable muscle weakness or atrophy yet since the twitching started on February 3rd.

I did research, and with the few cases of liquid leakage I have had out of the rectum when I had sudden urges to go, I discovered something called a Nuerogenic colon. When the colon does not contract or respond correctly due to nerve damage from motor neuron diseases.

I have also have had soft coughing a few minutes after finishing meals, and I do have a scalloped tongue.

I'll be honest with you guys; I'm scared. I'm quite terrified. I live in a poor family, and my father, while does a lot of things right, isn't exactly on top of priority when it comes to medicaid. I'm eighteen years old, no available vehicle to practice driving with so I can get a licence, and because of that it is nearly impossible for me to find a job so I can pay for an EMG. I have no money, still in highschool, and I live everyday in fear of something devastating happening to my body. The worst of it all is that the only way I'll find out is when something suddenly stops working.

I have nowhere else to go to about this, so I figured I would come here. I am truly sorry for anyone who has to go through such a terrible disease. Much more needs to be done.
 

KarenNWendyn

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Re: Just one update. Would like your thoughts.

The gut issues you’re having have absolutely nothing to do with ALS. Most likely you have an irritable bowel syndrome which can be aggravated by anxiety.

Neurogenic bowel is something else. But it is not part of ALS. ALS is a disease of motor neurons which control skeletal muscle. The gut has smooth muscle and is regulated by the autonomic nervous system, not by motor neurons.

You’ve described nothing having to do with ALS. Twitching is common, nonspecific, and meaningless. In the absence of muscle function failure, it means absolutely nothing.

You do not have ALS. You do not belong on an ALS forum. Please see a primary care doctor to help you get a handle on your anxiety and gut issues.

Good bye and good luck.
 

lgelb

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Re: Just one update. Would like your thoughts.

Merged your two threads. One to a DIHALS customer, please.

Again, there are free clinics in every area. Find one and they can help with your gut issues and anxiety. If you don't have Medicaid, they can help you file for it.

You don't have ALS.
 
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