BlueSkies21
Member
- Joined
- Dec 4, 2020
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CO
- City
- Denver
Hello all. I'm a 30YM in the US. I have been experiencing troubling symptoms for about 5 months now, and I never wanted to make a thread here, but I'm about at the end of my rope trying to figure this out. I apologize for the long thread, but I've spent alot of time gathering as much information as I can before even bringing this to you. I'm not looking for reassurance that I dont have ALS, nor am I looking for someone to tell me I do, if I dont. I'm hoping that those here can read my story and tell me if this seems to fit their experiences, or if it seems to be something else that others have mistaken for ALS in the past. So here is my story:
About 6 months ago, I took a hard fall and fractured my left knee. This was not related to my current illness (there were outside factors that caused this fall), but I will say it caused significant swelling and inflammation. This kept me at home for most of the last 5 months and made me relatively sedentary. Due to not being able to use it, in about 6 weeks, my left quad had atrophied to the point that I couldn't even flex it. I was placed into physical therapy and over time the quad rebuilt almost to a normal size. Ironically this leg does not appear to have any symptoms that the other leg is having.
Anyway, about 6 weeks after the injury, I began to experience full body twitching. These appeared out of nowhere, and havent stopped since that day.I also realized there was constant twitching, pulsing, and a sensation of squeezing in my right calf. Also, my right ankle developed a feeling that I can only describe as intense, focused weakness, like being disconnected. It doesnt feel numb or tingly, nor has it failed. It simply feels like it's made of wood or something, like it isnt attached to my leg.
2 weeks later, the back half of my tongue started to feel stiff. This feeling grew over time to cover the entire top of my tongue and then the bottom. It has made my speech difficult to articulate. In addition, my left upper arm and shoulder began to get a constant feeling of squeezing and pulsing. My thumbs (moreso my left) started hurting when using them. Using my left thumb to even pull up my pants in the morning was so painful I could barely do it. It felt like I was trying to hold up a bowling ball with just my thumb, like my thumb couldn't support any weight. I also noticed my facial muscles had become weak. Smiling, frowning, or squinting caused the muscles to tremble.
At this point I saw a neurologist. Clinical was clean. Referred me for bloodwork, MRI's (brain and spinal) and EMG (right arm and leg only). All were done, everything came back normal. She diagnosed BFS.
Weeks later, I followed up with the neurologist because my symptoms continued to worsen. At this time I noticed that my left arm was feeling weaker than the right. It would tremble and buckle when I tried to do normal things, like open a window, or pour a drink. During this visit, I also realized my right calf was quite a bit smaller and less toned that my left one. Didnt look sick per say, but definitely not equal. Neurologist agreed to do a more thorough EMG, full body this time. Results came back clean.
At that point, I figured maybe I was simply getting weak from sitting around for months and perhaps once I returned to regular activities, it would improve. I was able to return to work and regular activites about a month ago.
Since then, all symptoms have progressively gotten worse and more noticeable. So here is where I'm currently at:
-Fully body twitches still present.
-Right calf still stiff and experiences twitching, pulsing, and squeezing. Continues to be smaller than the left but doesnt looks to have changed in the last two months.
-Right ankle still has a large band of the disconnected feeling described above. Has not failed.
-Left shoulder and upper arm twitching and squeezing progressively worsening, and has spread to about were my elbow is. It will have bouts of intense twitching near my elbow.
-Weakness in the left arm has progressed. It feels like the shoulder and bicep are are trembly and shaky any time they are used. It is now noticeable in everyday activities. In addition, my left hand is starting to have difficulties moving and feels weak. It feels like the weakness in my upper arm is causing me to have difficulties moving my lower arm and hand. Simple things like holding a plate or manipulating a video game controller cause my hand and left arm to tremble. Even just extending all my fingers on my left hand causes it to tremble significantly.
-My tongue continues to feel stiff. I have adapted by just not pronouncing hard sounds with my tongue, but it is getting more difficult to speak in an articulate manner.
- My facial weakness has progressed. It is difficult to hold facial expressions or smile for a long time. I can hardly squint in sunlight, as the muscles around my eyes tremble uncontrollably when I try. I cant even open my mouth wide without my lips trembling.
And that brings me to your forum. I dont know where else to go with all of this. The doctors cant figure anything out, the tests so far show nothing. I feel like all I can do now is allow myself to just get weaker and worse until it's so obvious that it cant be denied. And I hate that. So I guess I would ask, does this sound like it could be ALS? Is there something else I should be doing to diagnose it? Does it sound like any other illness that anyone else has brought here before?
Thank you very much for your time. I know it's probably hard to listen to people who have no diagnosis, but I wouldnt be here if I didnt feel like it was one of my last hopes to figure this out. Any help and advice is appreciated more than you know.
About 6 months ago, I took a hard fall and fractured my left knee. This was not related to my current illness (there were outside factors that caused this fall), but I will say it caused significant swelling and inflammation. This kept me at home for most of the last 5 months and made me relatively sedentary. Due to not being able to use it, in about 6 weeks, my left quad had atrophied to the point that I couldn't even flex it. I was placed into physical therapy and over time the quad rebuilt almost to a normal size. Ironically this leg does not appear to have any symptoms that the other leg is having.
Anyway, about 6 weeks after the injury, I began to experience full body twitching. These appeared out of nowhere, and havent stopped since that day.I also realized there was constant twitching, pulsing, and a sensation of squeezing in my right calf. Also, my right ankle developed a feeling that I can only describe as intense, focused weakness, like being disconnected. It doesnt feel numb or tingly, nor has it failed. It simply feels like it's made of wood or something, like it isnt attached to my leg.
2 weeks later, the back half of my tongue started to feel stiff. This feeling grew over time to cover the entire top of my tongue and then the bottom. It has made my speech difficult to articulate. In addition, my left upper arm and shoulder began to get a constant feeling of squeezing and pulsing. My thumbs (moreso my left) started hurting when using them. Using my left thumb to even pull up my pants in the morning was so painful I could barely do it. It felt like I was trying to hold up a bowling ball with just my thumb, like my thumb couldn't support any weight. I also noticed my facial muscles had become weak. Smiling, frowning, or squinting caused the muscles to tremble.
At this point I saw a neurologist. Clinical was clean. Referred me for bloodwork, MRI's (brain and spinal) and EMG (right arm and leg only). All were done, everything came back normal. She diagnosed BFS.
Weeks later, I followed up with the neurologist because my symptoms continued to worsen. At this time I noticed that my left arm was feeling weaker than the right. It would tremble and buckle when I tried to do normal things, like open a window, or pour a drink. During this visit, I also realized my right calf was quite a bit smaller and less toned that my left one. Didnt look sick per say, but definitely not equal. Neurologist agreed to do a more thorough EMG, full body this time. Results came back clean.
At that point, I figured maybe I was simply getting weak from sitting around for months and perhaps once I returned to regular activities, it would improve. I was able to return to work and regular activites about a month ago.
Since then, all symptoms have progressively gotten worse and more noticeable. So here is where I'm currently at:
-Fully body twitches still present.
-Right calf still stiff and experiences twitching, pulsing, and squeezing. Continues to be smaller than the left but doesnt looks to have changed in the last two months.
-Right ankle still has a large band of the disconnected feeling described above. Has not failed.
-Left shoulder and upper arm twitching and squeezing progressively worsening, and has spread to about were my elbow is. It will have bouts of intense twitching near my elbow.
-Weakness in the left arm has progressed. It feels like the shoulder and bicep are are trembly and shaky any time they are used. It is now noticeable in everyday activities. In addition, my left hand is starting to have difficulties moving and feels weak. It feels like the weakness in my upper arm is causing me to have difficulties moving my lower arm and hand. Simple things like holding a plate or manipulating a video game controller cause my hand and left arm to tremble. Even just extending all my fingers on my left hand causes it to tremble significantly.
-My tongue continues to feel stiff. I have adapted by just not pronouncing hard sounds with my tongue, but it is getting more difficult to speak in an articulate manner.
- My facial weakness has progressed. It is difficult to hold facial expressions or smile for a long time. I can hardly squint in sunlight, as the muscles around my eyes tremble uncontrollably when I try. I cant even open my mouth wide without my lips trembling.
And that brings me to your forum. I dont know where else to go with all of this. The doctors cant figure anything out, the tests so far show nothing. I feel like all I can do now is allow myself to just get weaker and worse until it's so obvious that it cant be denied. And I hate that. So I guess I would ask, does this sound like it could be ALS? Is there something else I should be doing to diagnose it? Does it sound like any other illness that anyone else has brought here before?
Thank you very much for your time. I know it's probably hard to listen to people who have no diagnosis, but I wouldnt be here if I didnt feel like it was one of my last hopes to figure this out. Any help and advice is appreciated more than you know.