Andrea1653
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Hello, I have been searching around on this site for about a year now, but more often the past few months. I have been very hesitant on whether or not i should post as i do not want to waste your time, but I am to the point where i feel as though I have nowhere else to turn. I know you are not doctors and cannot diagnose me, but because you all have so much knowledge about this horrible disease, I would greatly appreciate your opinions, feedback and guidance.
My story is long and my symptoms are many. I want to apologize in advance, as I am not sure how to condense this without leaving out important details.
A quick background, I am a 33 year old mother of 3 (ages 9, 2 and 4 months). I do have generalized anxiety disorder that started around the time I gave birth to my first child and has gotten progressively worse since then. I also was anorexic for several years and at my lowest weight i was 87 lbs (I'm 5'8 ). I was in recovery when i got pregnant with my second child weighing around 100 lbs at that time. I gained 30 lbs during the pregnancy but I had a lot of issues throughout my pregnancy due to the fact that my body just could not handle it because I had been malnourished for so long. My point in telling you this, is that after I had my daughter is when I started having all sorts of health issues.
My issues ranged from gastrointestinal problems, Joint issues, vision problems, brain fog, Icepick headaches, constant fatigue and lack of energy, dizziness/vertigo, shortness of breath and speech issues. I had blood drawn for the fatigue and the only thing that came back abnormal was low vitamin d levels, which I took a supplement for and my levels came up to within normal range but the fatigue was still present. I had a chest xray for shortness of breath ( I had smoked for 15 years) which was normal, Endoscopy for gastrointestinal problems which was normal as well. My ENT specialist wanted to do a brain MRI with contrast for the dizziness/vertigo but I found out I was pregnant with baby #3 so I had to postpone the MRI until after I had the baby.
Around that time, which was August of 2016, was when I started noticing the symptoms that led me to this site. The first symptom was that I noticed that the pointer finger would shake back and forth very quickly when I put my finger in a certain position. Shortly after this, I became aware that my entire body seemed to constantly be shaking, and was much worse after any kind of exertion. If I hold very still you can see my hair shaking, or my shirt shaking, etc. It also feels like my left should/bicep area and back are vibrating. It gets worse throughout the day. If I lean up against a wall, it feels like the wall is vibrating or if I sit with my back on the couch it feels as though the couch is vibrating, etc.
I feel weak. All over. If I purse my lips, them tremor. If I raise my eyebrows, they do the same. If I would pick up a 24 pack of water and carry it inside, once I set it down I will be shaking like a leaf and need to sit down to rest for the shaking to lessen. It never goes away 100% though. I took my daughter on a bike ride and had to come back because my legs felt so weak and when I got off of my bike my legs were shaking so bad and I thought my legs were going to give out.
My movements don’t seem fluid anymore. If I bend my wrists down, they judder down as well as ankles, etc.
I was very confused about every thing that was going on so I went to Dr. Google and discovered ALS as one of the possible causes. I had read something about tongue fasciculation's and decided to go to the mirror and check out my tongue. HUGE MISTAKE!! When I stuck my tongue out, it looked like the left side of my tongue was in a dance off competition with the right side of my tongue! It was bouncing all over the place! This has continued to this day. That's when the true panic set in and when the fasciculation’s started.
From that point, I started having fasciculation’s everywhere. They were random at that point but mostly felt in my neck, back, left arm. Because of the fasciculation’s, my tongue and my left arm (which was fatiguing much faster than the right and the arm and where I felt the vibrations the most) were my biggest concern so I got a referral to see a neurologist in January of 2017. She is my current neurologist, and she specializes in strokes. She did a basic exam, said she didn't find anything unusual but would schedule an emg just in case. She did not note whether or not my reflexes were brisk but when she checked for Babinski, my toes didn’t move at all on either foot. My OBGYN didn't want me having the MRI done until after I had the baby so I had to wait once again with my symptoms getting worse by the month.
I had also been having trouble with my speech for some time. It isn’t so much that I’m slurring my words, although I think I do a little bit but no one else seems to think so. But when I talk, sometimes words just come out wrong, like I completely garble the words up. I feel like I have to try harder to enunciate my words properly.
Fast forward to after the birth of my last baby which was May 9th 2017. My symptoms have gotten worse and I have new ones as well. The shaking, vibrating, feeling of weakness (mostly on left side), fasciculation’s and overall fatigue is a lot worse, but up until July, most of my symptoms seemed to be from the waste up, besides the shaking which was everywhere.
If you are still with me, thank you so much!
In July I noticed that my left foot looked noticeably different than my right foot. It was thinner and the extensor digitorum brevis muscle on my left foot is much smaller on my left foot than it is on my right. And just above that muscle there is a huge crater that is not there on my right foot. I then noticed that there are constant fasciculation’s on the top of my foot, and I also have contraction fasciculation’s. If I press my toes down or up, it looks like an electrical storm on the top of my foot. I was also noticing that it felt awkward to stand. The arch of my foot feels strange and when I stand it feels as though I am not standing on it naturally anymore.
By August 2017 I have had a Brain MRI which the only things noted were that I have a partially empty Sella and there is Sulcal prominence that is slightly advanced for patients age. I have had a full spine MRI which only showed mild bulging discs in my lower back but that they weren’t cutting off any of my nerves and wouldn’t cause my symptoms. I have had tons of blood work to check for lymes, Autoimmune, vitamin deficiencies, ck , etc. All of which were negative or normal. I also had an EMG done by a Neurophysiologist, which was done on the left side of my body. 3 needles in my feet (none in the arch or under my foot), 1 halfway up my shin, one in my calf, shoulder and hand. Several up my back and in the back of my neck and one under my chin. The NVC was normal and he told me that he saw the fasciculation’s but that was it and told me I have BFS.
Since then, things have gotten progressively worse. My left foot looks like it has atrophied so much in the past 2 ½ months, my tendons are now sticking out on my left foot, especially up at the top of my foot where the lower leg meets the foot. I am having significant pain all over the foot and ankle, it feels as though my bones and tendons are rubbing together. I have pains from sharp pains, to aching, sore, and to where My foot almost feels bruised. I wake up every morning and my foot and toes are stiff and hurt non stop all day long but it is much worse after walking any short distances. The Fasciculations are also worse when I am up and walking. It feels like non stop pop corn popping. When I wear flip flops, the left one slides off while walking constantly and when I wear shoes it hurts my foot. The bottom of my foot hurts to walk on any hard surface and it looks as though there is loose and wrinkled skin, which is not the case for my right foot.
My foot/ankle and shin feel weak. Walking is a huge challenge for me now. If I walk, even for a short distance it feels harder to lift my foot up. Im not tripping but I’m also sitting for about 80% of the day now because I think I’m doing more damage to my leg and foot by walking. I also have non stop fasciculation’s not only on the top of my foot, but the bottom and arch as well, and they are becoming more frequent in my lower leg. All of the foot/ankle/lower leg symptoms are only on my left side. And they just started in my foot in July and seem to be spreading up my leg at an alarming rate.
My calf on the left side feels like its going to cramp up, but never fully does. My shin muscles feel weak when walking. I have atrophy all over my foot and ankle. Pain and aching in foot/ lower leg that is worse when walking but always present. My shoulder feels weak and heavy. Fasciculations for over 3 months that are 24/7 in my foot, becoming more frequent in lower leg and random ones all over. The body wide fasciculation’s have been going on for a year now. Constant shaking/ trembling/ vibrating and general fatigue everywhere
These symptoms started a year ago, but dropped down to my foot in july and it has been rapidly progressing since. With the way my leg and foot feels, I am afraid I am not going to be able to walk in a couple of months. What I don’t have is answers as to why this is happening to me.
As of now I am not clinically weak. I can pass all of the tests the neurologists ask me to perform. I don’t understand how I can have so much atrophy in my foot but I am not clinically weak. I am however, not able to do all of the things I used to do. I was always a go go go kind of person. I never sat down. Now, even housework seems to be hard. The more I walk on my foot, the weaker it feels and the more pain I’m in, and the weakness is spreading up my leg. I also don’t think I could run. I can’t take my kids places because it’s too hard on me now. If I hold my 2 year old daughter, I limp because it’s like my leg can’t support the extra weight. Something is seriously wrong with me and I am terrified that I have ALS. I am having a hard time functioning and I don’t know who else to turn to because everyone seems to write me off as an anxiety case and I know my anxiety can’t cause this.
Any opinions, feedback or suggestions would be appreciated more than you know.
My story is long and my symptoms are many. I want to apologize in advance, as I am not sure how to condense this without leaving out important details.
A quick background, I am a 33 year old mother of 3 (ages 9, 2 and 4 months). I do have generalized anxiety disorder that started around the time I gave birth to my first child and has gotten progressively worse since then. I also was anorexic for several years and at my lowest weight i was 87 lbs (I'm 5'8 ). I was in recovery when i got pregnant with my second child weighing around 100 lbs at that time. I gained 30 lbs during the pregnancy but I had a lot of issues throughout my pregnancy due to the fact that my body just could not handle it because I had been malnourished for so long. My point in telling you this, is that after I had my daughter is when I started having all sorts of health issues.
My issues ranged from gastrointestinal problems, Joint issues, vision problems, brain fog, Icepick headaches, constant fatigue and lack of energy, dizziness/vertigo, shortness of breath and speech issues. I had blood drawn for the fatigue and the only thing that came back abnormal was low vitamin d levels, which I took a supplement for and my levels came up to within normal range but the fatigue was still present. I had a chest xray for shortness of breath ( I had smoked for 15 years) which was normal, Endoscopy for gastrointestinal problems which was normal as well. My ENT specialist wanted to do a brain MRI with contrast for the dizziness/vertigo but I found out I was pregnant with baby #3 so I had to postpone the MRI until after I had the baby.
Around that time, which was August of 2016, was when I started noticing the symptoms that led me to this site. The first symptom was that I noticed that the pointer finger would shake back and forth very quickly when I put my finger in a certain position. Shortly after this, I became aware that my entire body seemed to constantly be shaking, and was much worse after any kind of exertion. If I hold very still you can see my hair shaking, or my shirt shaking, etc. It also feels like my left should/bicep area and back are vibrating. It gets worse throughout the day. If I lean up against a wall, it feels like the wall is vibrating or if I sit with my back on the couch it feels as though the couch is vibrating, etc.
I feel weak. All over. If I purse my lips, them tremor. If I raise my eyebrows, they do the same. If I would pick up a 24 pack of water and carry it inside, once I set it down I will be shaking like a leaf and need to sit down to rest for the shaking to lessen. It never goes away 100% though. I took my daughter on a bike ride and had to come back because my legs felt so weak and when I got off of my bike my legs were shaking so bad and I thought my legs were going to give out.
My movements don’t seem fluid anymore. If I bend my wrists down, they judder down as well as ankles, etc.
I was very confused about every thing that was going on so I went to Dr. Google and discovered ALS as one of the possible causes. I had read something about tongue fasciculation's and decided to go to the mirror and check out my tongue. HUGE MISTAKE!! When I stuck my tongue out, it looked like the left side of my tongue was in a dance off competition with the right side of my tongue! It was bouncing all over the place! This has continued to this day. That's when the true panic set in and when the fasciculation’s started.
From that point, I started having fasciculation’s everywhere. They were random at that point but mostly felt in my neck, back, left arm. Because of the fasciculation’s, my tongue and my left arm (which was fatiguing much faster than the right and the arm and where I felt the vibrations the most) were my biggest concern so I got a referral to see a neurologist in January of 2017. She is my current neurologist, and she specializes in strokes. She did a basic exam, said she didn't find anything unusual but would schedule an emg just in case. She did not note whether or not my reflexes were brisk but when she checked for Babinski, my toes didn’t move at all on either foot. My OBGYN didn't want me having the MRI done until after I had the baby so I had to wait once again with my symptoms getting worse by the month.
I had also been having trouble with my speech for some time. It isn’t so much that I’m slurring my words, although I think I do a little bit but no one else seems to think so. But when I talk, sometimes words just come out wrong, like I completely garble the words up. I feel like I have to try harder to enunciate my words properly.
Fast forward to after the birth of my last baby which was May 9th 2017. My symptoms have gotten worse and I have new ones as well. The shaking, vibrating, feeling of weakness (mostly on left side), fasciculation’s and overall fatigue is a lot worse, but up until July, most of my symptoms seemed to be from the waste up, besides the shaking which was everywhere.
If you are still with me, thank you so much!
In July I noticed that my left foot looked noticeably different than my right foot. It was thinner and the extensor digitorum brevis muscle on my left foot is much smaller on my left foot than it is on my right. And just above that muscle there is a huge crater that is not there on my right foot. I then noticed that there are constant fasciculation’s on the top of my foot, and I also have contraction fasciculation’s. If I press my toes down or up, it looks like an electrical storm on the top of my foot. I was also noticing that it felt awkward to stand. The arch of my foot feels strange and when I stand it feels as though I am not standing on it naturally anymore.
By August 2017 I have had a Brain MRI which the only things noted were that I have a partially empty Sella and there is Sulcal prominence that is slightly advanced for patients age. I have had a full spine MRI which only showed mild bulging discs in my lower back but that they weren’t cutting off any of my nerves and wouldn’t cause my symptoms. I have had tons of blood work to check for lymes, Autoimmune, vitamin deficiencies, ck , etc. All of which were negative or normal. I also had an EMG done by a Neurophysiologist, which was done on the left side of my body. 3 needles in my feet (none in the arch or under my foot), 1 halfway up my shin, one in my calf, shoulder and hand. Several up my back and in the back of my neck and one under my chin. The NVC was normal and he told me that he saw the fasciculation’s but that was it and told me I have BFS.
Since then, things have gotten progressively worse. My left foot looks like it has atrophied so much in the past 2 ½ months, my tendons are now sticking out on my left foot, especially up at the top of my foot where the lower leg meets the foot. I am having significant pain all over the foot and ankle, it feels as though my bones and tendons are rubbing together. I have pains from sharp pains, to aching, sore, and to where My foot almost feels bruised. I wake up every morning and my foot and toes are stiff and hurt non stop all day long but it is much worse after walking any short distances. The Fasciculations are also worse when I am up and walking. It feels like non stop pop corn popping. When I wear flip flops, the left one slides off while walking constantly and when I wear shoes it hurts my foot. The bottom of my foot hurts to walk on any hard surface and it looks as though there is loose and wrinkled skin, which is not the case for my right foot.
My foot/ankle and shin feel weak. Walking is a huge challenge for me now. If I walk, even for a short distance it feels harder to lift my foot up. Im not tripping but I’m also sitting for about 80% of the day now because I think I’m doing more damage to my leg and foot by walking. I also have non stop fasciculation’s not only on the top of my foot, but the bottom and arch as well, and they are becoming more frequent in my lower leg. All of the foot/ankle/lower leg symptoms are only on my left side. And they just started in my foot in July and seem to be spreading up my leg at an alarming rate.
My calf on the left side feels like its going to cramp up, but never fully does. My shin muscles feel weak when walking. I have atrophy all over my foot and ankle. Pain and aching in foot/ lower leg that is worse when walking but always present. My shoulder feels weak and heavy. Fasciculations for over 3 months that are 24/7 in my foot, becoming more frequent in lower leg and random ones all over. The body wide fasciculation’s have been going on for a year now. Constant shaking/ trembling/ vibrating and general fatigue everywhere
These symptoms started a year ago, but dropped down to my foot in july and it has been rapidly progressing since. With the way my leg and foot feels, I am afraid I am not going to be able to walk in a couple of months. What I don’t have is answers as to why this is happening to me.
As of now I am not clinically weak. I can pass all of the tests the neurologists ask me to perform. I don’t understand how I can have so much atrophy in my foot but I am not clinically weak. I am however, not able to do all of the things I used to do. I was always a go go go kind of person. I never sat down. Now, even housework seems to be hard. The more I walk on my foot, the weaker it feels and the more pain I’m in, and the weakness is spreading up my leg. I also don’t think I could run. I can’t take my kids places because it’s too hard on me now. If I hold my 2 year old daughter, I limp because it’s like my leg can’t support the extra weight. Something is seriously wrong with me and I am terrified that I have ALS. I am having a hard time functioning and I don’t know who else to turn to because everyone seems to write me off as an anxiety case and I know my anxiety can’t cause this.
Any opinions, feedback or suggestions would be appreciated more than you know.
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