battlingunknown
New member
- Joined
- Sep 7, 2014
- Messages
- 7
- Reason
- 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 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