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battlingunknown

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Joined
Sep 7, 2014
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Learn about ALS
Country
US
State
ne
City
lincoln
Hello, I am coming on here first to thank you for reading my post and also tell you all how strong you are and I pray there will be a cure.

I am 23 years old, female, around 125 lbs and 5'7 and half. I am not very active and don't eat the best but i have been changing my eating habits over the past few months.

Basically I am scared i have ALS, no I did not just hear about ALS because of the IBC, Iv been doing research for a while now now because my symptoms are so strange I'm doing what ever i can to figure out what is wrong with me. NO I am not a hypochondriac, i wish there was nothing that was wrong but the truth is that is not the case.

let me start from the beginning as i think it may be helpful, I was 18 years old, when i moved from the east coast to the Midwest, Nebraska to be exact. I have always had excellent health, no allergies, no surgeries no illness nothing. Suddenly around March or so, my friends and i went to the nail salon, we got pedicures and acrylic nails it was chilly, I remember that night when i got home, my body felt so weak, it was aching, i also had a headache and i believe i also had a fever. I thought it was just a cold or the flu, a week or so past and i felt better. About a week later, my symptoms actually came back but wee a lot worse.

within a short period of time, I'm talking about weeks, I had a swollen knee, and feet, i had weakness all over, my joints were aching so bad i cried my self to sleep, i lost weight, had dark circles around my eyes, my hands were so weak i could not get up by myself because any pressure against my wrist hurt so bad i couldn't even try. When I would walk, i would take baby steps, slowly, little by little because I couldn't move too fast. I remember taking a hot shower once and i was even sitting on a chair, i came out the sower and felt so dizzy i actually passed out and woke up seconds later with my head in the sink.

Here I was, a senior in high school, who prior to this had excellent health, now couldn't walk or get up without assistance. Who had unexplained swelling of knees, and who is already thin losing weight. I also noticed sometimes I would get these flying specs in my vision that would last for a few seconds or minutes. I went to the ER several times, saw my doc several times and ran multiple blood tests (of course came back normal). My doctor referred me to a Rheumatologist. I was walking towards the hospital and an old gentleman asked me if i anted a wheelchair, and i said no and just started crying. I walked into the office and all i saw was old folks in there using canes and who had crooked fingers and all i could think was WHY? I'm only 18 this shouldn't be happening to me, i cried the entire time there.

The RA doc ran blood work, also took some fluid from my knee and i cant remember if he did any Xrays, but aside from inflammation in my knee, he said my blood work came back normal, he prescribed Prednisone for about 2 months and said he hopes it helps, and it did. I immediately got better, and soon returned to normal. I went back to him for a followup, he was so happy to see that the Prednisone worked. He looked t me and said "I didn't think this would work". He said it must have been a virus of some sort that got out of control. I also went to my doctor for a followup and she was also happy i was better but she told me she doesn't think this will ever leave me for good. Her words have haunted me till this day.

fast forward 5 years. I still get those specs in my vision and instead of little floaters its more like lines and they also last longer. I hardly get them but when i do they last at least 5-15 minutes. I also have (since that episode) had morning stiffness most days and some joint pain here and there, nothing major, nothing to worry about.

A little over two years ago, my job was doing this scavenger hunt, during one of the activities, we had to run in, eat hot wings, take a pic and run out. well, i did all that, except as i was running out, i slammed face first into the glass door. I didn't fall but i flt that impact and it was horrible. i told everyone i was fine but felt horrible, and my nose was also cut open.

Last year during March to May, i was over seas, i got sick, i had very bad diarrhea, and my joints started hurting so bad. I also ha a horrible toothache that i literally thought i would die of because it hurt so bad. Anyway, after some pills the doc gave me, i did get better.

Now, I was doing fine until May of this year.

During the first weeks of May, I noticed my left foot was hurting, i didn't mind I thought "oh its another one of those aches that will go away". well i was wrong. I worked an 8 hour shift t work, and as the ay was going by i noticed the top of my left foot was swelling. I had also noticed for the past few months I have been having ringing in my ear, and headaches more often. Also occasionally i was sensitive to sound, for example i would be fine and I would hear a suddenly beep and it would startle me. Also if the tv was too loud it would really bother me.

I was starting to get joint pain all over. My shoulders, my hips, my feet, elbows wrist, fingers etc. I went to the ER and they ran a few blood tests and nothing.

Few days later my left arm, the upper armpit area felt heavy, and started feeling that numb tingly feeling. I was doing hand exercises and massages but nothing helped. That night as i was laying in bed, that tingly numb feeling i had in my left arm, went up my left side of my neck and then my face. I immediately got out of bed (this was around 4 am) and started having a panic attack. My legs were shaking uncontrollably, i was trying to breath slowly and deeply to calm my self down, i got my phone out and put it on funny videos to calm my self down. (((as i am typing this, I got a stabbing pin in my right side of my head, a really bad cramp in my right foot, and right hand and twitching my in right shoulder and back of my right leg)))

Anyways, after i calmed my self down, i fell asleep and the net day i woke up with that tingly numb feeling, all over my body. It would make its way through my body all day non stop. For example, my left arm would be numb and tingly, suddenly it would stop and my right arm would be that way, then it would be on my legs, or back, or neck, or face. This was constant all throughout the day, until around 12 am I went to the ER once again and explain my symptoms. She basically dint do anything and gave me a muscle relaxer and sent me on my way once again

I'm sure you are all wondering why i hadn't seen my doctor, well I don't have insurance, (I am in the process of getting it).

Without insurance i went to a doctor my friend works for and he was very sweet, he took blood and asked question to see what was wrong. blood work came back fine. I went back a few weeks alter because i had a rash on my hand ( not contagious), I don't know what it was from back it happened last year too and it goes away.

The third time I saw him, I was still experiencing my pains, but I was also starting to get this pain under my right armpit. He ordered an ultra sound and he also ordered a brain MRI since my blood work was always coming back normal.

My brain MRI without contrast came back normal, my ultrasound didn't show anything. He referred me to a Neurologist, and this Neurologist specialized in headaches which i didn't know wt the time. My doctor wanted me to see one of two other neurologist but they were booked for the next month or so so the receptionist made an apt with this Neurologist.

needless to say he was a total ass. He didn't listen to anything i was saying, he didn't run any blood work, he didn't order an EMG, he didn't order any other MRI'S or spinal taps. He would cut me off when i was talking and basically told me " if you think you have some crazy disease your wrong" I was furious!

Do these doctors think I am making all this up? do they think I think its cool to be sick or ill? That i want a disease and spend all this money on doctor visits?

Im right at square one, 5 years ago, not knowing hats wrong and being left in the dark.

my symtoms since May ad to Today, include
*muscle weaknes
*burning sensations throughtout body
*numbness mostly in my feet
*muscle cramps
*severe headaches
*burred vision sometimes
*joint pain mostly ankles wrist or shoulders and knees
*ringing in ear/sensitivity to sound
*fatigue and tiredness all the time
*my right thigh, in the back hurts sometimes and feels stiff especially when diving
*my arms, and fingers especially my left is usually heavy and stiff. It feels tighter
*ever since my brain MRI iv been having twitching all over my body and it hast stopped since. its especially bad when relaxed or laying down. Sometimes the fasciculations are so big it shows under y blanket. My right arms as twitching for the entire day.I get them all over, my legs, arms, stomach, chest, NECK, shoulders, feet, hands, toes butt, eyelids literally everywhere.
*slight muscle jerking

I'm sorry my post is so long, but i feel like it is important to know how it all started. My hands feels so week after writing this. I'm sorry for any typos or misspelled words.

I hope I can get some answers here. Thank you in advance
 
I guess the things that make you consider ALS are weakness and twitching? Did you read the sticky at the top of this forum as I told you to when I sent you a pm about how to post?
If you did you know twitches are very common and mostly benign especially when they are all over, that there is a difference between feeling weak and clinical weakness and all the other things you feel are not symptoms of ALS
You need to look elsewhere for an answer. Fortunately for you the answer is not here
 
I read the sticky notes and I thank you for messaging me, but it's not just the twitching and weakness... I feel like I'm losing grip and regular strength in my hands ..the twitching has never happened to me before in my life until recently when all this craziness started, and the cramps are very painful. I also forgot to mention when this first started in May, I would and still do get random bruises on my legs .. Not because of an injury or bumping it on something .. They just show up! My fingers cramp when typing for a few minutes.. The twitching is the most concerning part .. As I'm typing my leg is twitching..
 
Battling, I found your story very interesting. Unlike the dozens of "Do I Have ALS?" stories that I read every day, I actually enjoyed reading yours.

First, let me say unequivocally that you don't have ALS, no way, no how. I'd stake my own life on that one. I've been around and amongst people with ALS (including my own wife) and studied up on the disease more, perhaps, than the average person with ALS. You don't have ALS at all.

Second, I'd like to address the a$$h0le neurologist you saw who treated you poorly. He was correct, but could have made his presentation more palatable. Some of these guys (I know a lot of doctors--my wife was a doctor for 20 years) are really geniuses but could use a better personality. They've spent their whole lives literally being the smartest person in the room, and they haven't needed to develop people skills.

Third, take it from me, an old guy, that your symptoms are not entirely unheard of for a young woman. I'm not surprised they began when you left home for Nebraska. It's a bummer that they've all jumped on you all at once. You're overwhelmed.

Finally, I hope to get you on your way toward a better, more healthy life. You need a very advanced, smart doctor who understands how the body and brain interact, someone who can help you feel better while you're also getting better. I have found, myself, that with a little luck, you can find the right provider to work with both your body and your emotions. I recommend seeing a full fledged psychiatrist. They're able to work with your body chemistry as well as your brain chemistry.

EDIT TO ADD: Am I saying it's all in your head? No! And yes. The brain controls all your twitching, all your feelings, and muscles. It's all in the brain and brain stem. That's why I think a psychiatrist (not a psychologist) should be your next stop.

The cost is a problem, but the resulting health and happiness is definitely worth it. Good luck.
 
This does not sound at all like ALS.

But, I would visit an endocrinologist to rule out thyroid related/hormonal issues. Please make sure that all bloodwork is taken, many doctors ignore for instance free TSH for thyroid because they deem it is not needed when other tests show nothing.

What many people might not know is that thyroid related issues can mimic neurological issues in forms of twitching, cramping, feeling weak. Both thyroid and hormonal problems can produce aching joints and swelling.

I would also like to stress what Atsugi is saying above, that seeing a counsellor getting to terms with changes in your life and stress over your health is the first thing you should do. Regardless of if you actually have a medical issue (not ALS!), it is clear that you have a psychological factor.
 
The ACA enrollment period will allow you to see competent medical professions who can take a whack at your mental illness. In the meantime find something else to fill your diary with. I'm unfortunately skeptical that any of this is real.
 
@mediasmart that's actually very rude of you to come on my post and suggest I have a mental illness and to take my diary somewhere else. This is a support group and with the symptoms iv been having I came on here looking for direction. I'm Appalled and very dissapointed for your comment.

To Everyone else who commented thank you for your kindness
 
>Fortunately for you the answer is not here

Ditto that!

See if you can find a clinic or, even better, a university medical facility where you can see a knowledgeable gp and take your whole story, outlined by dates, and review it with him/her. get a complete physical.

strike ALS from your list. and be glad.

very good luck to you ...
 
my symtoms since May ad to Today, include
*muscle weaknes--has any medical professional said you have clinical weakness?
*burning sensations throughtout body--sensory, not ALS
*numbness mostly in my feet--sensory, not ALS
*muscle cramps--very common, not diagnostic of anything
*severe headachesa*burred vision sometimes-- not an ALS symptom
*joint pain mostly ankles wrist or shoulders and knees--pain points away from ALS
*ringing in ear/sensitivity to sound-- not ALS
*fatigue and tiredness all the time--very common, not diagnostic of anything
*my right thigh, in the back hurts sometimes and feels stiff especially when diving--pain points away from ALS
*my arms, and fingers especially my left is usually heavy and stiff. It feels tighte--very common, not diagnostic of anything
*ever since my brain MRI iv been having twitching all over my body and it hast stopped since. its especially bad when relaxed or laying down. Sometimes the fasciculations are so big it shows under y blanket. My right arms as twitching for the entire day.I get them all over, my legs, arms, stomach, chest, NECK, shoulders, feet, hands, toes butt, eyelids literally everywhere--very common, not diagnostic of anything
*slight muscle jerking--very common, not diagnostic of anything

I don't believe your symptoms point to ALS. I think you should pay attention to what Atsugi and Kosmo said above. And it's probably time to try to stop diagnosing yourself. Seek competent medical advice and stay away from Google and the internet.
 
I am so sorry that you are having problems. But, you definitely with you symptoms don't have ALS. All of the symptoms you mentioned and I mean every single one of them can be caused purely by stress alone. You may also have a true physical problem on top of it but it's not ALS. So, you really don't need to be on the forum. Please try seeing a psychiatrist and see if it helps you out any. Just because one goes to see one in no ways means that they are nuts. There is nothing to be ashamed about in being under stress or even to have depression. Good luck to you!
 
please be nice

Thank you very much to those who answered my last post. The thing is I'm really tired of people assuming this is all in my head. I KNOW when my body acts different or feels different. I can't cause swelling in my feet, I can't get bruises mysteriously, and the twitches just started a few months ago. There HAS to be a cause as to why these muscle fasciculations started and why they wont leave. These aches and pains I feel are not imaginary, I'm 23 I don't have a mental illness, and never have. It's just frustrating and sad when I and many others go through this and feel alone because everyone assumes it's depression, or anxiety or bordum. Everyone wants to be healthy, no one is trying to "fit in" on these forums, We simply are lost, we are trying to figure out what is happening to us, we are looking for your opinions, your words of wisdom, we are looking for guidance.

I'm truly sorry if my post offends anyone on here. I know it probably is frustrating to those who are battling this horrible disease or know or care for someone who is. I know I respect you and pray for a cure soon. I do ask, please be kind to people who are visiting this page, i'v seen many post of users on here who are just plain mean. There is a reason that person is here, just keep that in mind.

God Bless
 
Re: please be nice

Sorry Beky, I know Nikki is out of action at present, so would you mind merging this into the DHIALS thread this person already started.

battling, please don't start multiple threads.

The PALS here often are using technology by scanning the screen with their eyes and blinking. It's time consuming and it takes so much energy and they already have so little energy.
It sounds like it's easy to others, but you have to see a PALS using technology this way to understand how much time and energy it takes to get to a thread, open it, read it and realise it's a repeat thread that should be somewhere else.

Please be considerate, I know you feel some are mean, but truly they are battling issues you can't even imagine. Most of the CALS are so tired and emotionally drained they are not much better.

We do try to help people who are scared, but we can only answer, and if it isn't liked and people keep trying to convince us, well ...

We all hope for a cure for the future, but we all know that anyone with this disease now is not going to benefit from any cure. We are living with dealing with that fact. We have lost many wonderful people dear to us the past couple of months and it never gets any easier.

I do hope you find answers, but it's doctors you need to work with honey. We can only say your symptoms do not match ALS. All the best.
 
Re: please be nice

Your post is, I am sorry to say, offensive on so many levels. People with diagnosed ALS are dying, nothing more, nothing less. There is no probably frustrating about it, it is frustrating when opinions are given and then they are questioned over and over again. I see that your forum interest is that you are interested in learning about ALS/MND, therefore I suggest that you take some time to read through the threads and in particular the main stickie in the Do I have ALS forum and take on board the advice there.

I am sorry if my post upsets you but if you had read through the proliferation of advice given to others you will know that 'aches and pains' are not a presenting feature of ALS and that there are many causes of fasiculations other than ALS. At 23 you would be a rareity indeed to be visited by this disease. By all means, be interested in learning about ALS/MND but please do not question the advice/experience given by someone who has been diagnosed with it
 
Re: please be nice

For those who don't have ALS: your question is considered and answered.
For those who don't have ALS and continue to seek reassurance: you're wasting the precious time of those who monitor this thread.

For those who might have ALS: Welcome. Vent and rant all you like. We're here for you.

To the PALS who monitor this thread: your input is so very valuable. I appreciate it when you answer the hard questions. Thanks.
 
You say bruises and swelling of feet can't be imagined. Well, neither one is a symptom of ALS even if you do have them. You mention your aches and pains aren't imagined, either. Again, aches and pains are not "felt" by people with ALS. Why not take the the wonderful, sound advice given to you on here, forget about ALS and get on with your beautiful, young ALS-free life.
 
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