Dtaylorgrape
New member
- Joined
- Feb 15, 2015
- Messages
- 2
- Reason
- Learn about ALS
- Country
- US
- State
- CA
- City
- hawthorne
I am 28 years old. No family history of ALS but there is a lot of random neurological problems in my family from: my grandfather having parkinsons, my mother suffering from chronic muscle cramping and my aunt who has myclonic tourettes. It’s been about 7 months since my first sign of weakness and twitching and this is a quick rundown of my symptoms thus far.
It all began with weakness in my left hand that also had some pain in it. I assumed carpal tunnel because I am a musician yet i’ve never had it before. This came with twitching in my calves that later manifested everywhere in my body. Legs, diaphragm, face, mouth, stomache, and arms. This weakness in my hand moved up my arm and i’ve had several episodes of extreme weakness that seems to remit and return every few days. About two months later I developed weakness in my right leg. I tested my strength frequently by standing on my toes and heels. I could do both just fine until recently when I lost my toe walk in the affected leg. I also developed weakness in breathing that has only gotten worse with time. It began with episodes of shallow breathing and feeling like I can’t take a deep breath to weak breathing all the time without any breaks. The breathing weakness has been the most problematic and I am at the point where I can’t breathe very well most of the time especially when driving for some reason. I’ve called the paramedics more times than I would like to admit because of sudden weakness in my breathing where I feel like i’m going to die because I can’t take an adequate breath. Now 7 months later I cannot walk on my right toes, my breathing is very inconsistent often degrading into extreme weakness if I talk to much or walk very far. The twitching is still rampant everywhere in my body. I’ve been to 3 neuros. The first noticed my brisk reflexes but could not observe any fasciculations. He performed an EMG and jumped right to ALS testing my weak limbs and admitting he was not qualified to diagnose ALS and sent me to a ALS qualified neuro saying ‘possible ALS'. This was in the beginning of my symptoms. 3 months later I saw a neuro from an ALS clinic and he said I had hypperflexia in my arms and legs but they were all symmetrical. He then performed another EMG and said no ALS but could not explain my weakness and suggested BFS.
I continued to get worse over the next 4 months especially with my breathing that has become so uncomfortable I can’t stand the weakness. I had a full pulmonary workup in that time and the findings were that my breathing was very inconsistent. Jumping from shallow to non shallow breaths constantly. My fvc was 99% but my sniff(SNIP) was low 73%. Also in that time I had a brain MRI (came back clean) and was tested for MG which also came back clean. I’ve now just recently seen my 3rd neuro who performed EMG number 3 but this time I had a 2 different kinds. The first was where they shock you and the second was the needle. For the first one he tested both my arms and said ‘You either have a pinched nerve in both arms or something else is going on here’. After the needle EMG I asked boldly if he saw any chronic denervation and he said no. ‘Fasciculations means chronic denervation and I don’t see any here’. He also stated that there was some neck arthritis on the X-ray that was taken a month before and he wants to look into that further. Could neck arthritis really be the cause of this? I recently noticed that the calf muscle in my right leg is smaller than the non effected leg which is also the muscle that flexes when I point my toes down (toe walk). I really think that what i’m seeing is atrophy. I also have developed restless legs at night and it is difficult to fall asleep.
Trying to be proactive I have been juicing CNS healthy foods like spinach, blueberries, cilantro, lemon, and kale which I consume a lot everyday which has had no effect on my symptoms. I’m wondering if my symptoms sound consistent with ALS. From my reading i’ve learned that breathing is not affected from the onset which i’ve had. I know that it’s possible but being young with no family history puts the astronomical odds in my favor that it’s not thoracic onset. But I guess anything is possible. I’m here because i’m 7 months into a diagnostic nightmare and I just want a true ALS experts opinion (you guys). I’m not afraid to die. I just want closure at this point. Thank you for reading.
It all began with weakness in my left hand that also had some pain in it. I assumed carpal tunnel because I am a musician yet i’ve never had it before. This came with twitching in my calves that later manifested everywhere in my body. Legs, diaphragm, face, mouth, stomache, and arms. This weakness in my hand moved up my arm and i’ve had several episodes of extreme weakness that seems to remit and return every few days. About two months later I developed weakness in my right leg. I tested my strength frequently by standing on my toes and heels. I could do both just fine until recently when I lost my toe walk in the affected leg. I also developed weakness in breathing that has only gotten worse with time. It began with episodes of shallow breathing and feeling like I can’t take a deep breath to weak breathing all the time without any breaks. The breathing weakness has been the most problematic and I am at the point where I can’t breathe very well most of the time especially when driving for some reason. I’ve called the paramedics more times than I would like to admit because of sudden weakness in my breathing where I feel like i’m going to die because I can’t take an adequate breath. Now 7 months later I cannot walk on my right toes, my breathing is very inconsistent often degrading into extreme weakness if I talk to much or walk very far. The twitching is still rampant everywhere in my body. I’ve been to 3 neuros. The first noticed my brisk reflexes but could not observe any fasciculations. He performed an EMG and jumped right to ALS testing my weak limbs and admitting he was not qualified to diagnose ALS and sent me to a ALS qualified neuro saying ‘possible ALS'. This was in the beginning of my symptoms. 3 months later I saw a neuro from an ALS clinic and he said I had hypperflexia in my arms and legs but they were all symmetrical. He then performed another EMG and said no ALS but could not explain my weakness and suggested BFS.
I continued to get worse over the next 4 months especially with my breathing that has become so uncomfortable I can’t stand the weakness. I had a full pulmonary workup in that time and the findings were that my breathing was very inconsistent. Jumping from shallow to non shallow breaths constantly. My fvc was 99% but my sniff(SNIP) was low 73%. Also in that time I had a brain MRI (came back clean) and was tested for MG which also came back clean. I’ve now just recently seen my 3rd neuro who performed EMG number 3 but this time I had a 2 different kinds. The first was where they shock you and the second was the needle. For the first one he tested both my arms and said ‘You either have a pinched nerve in both arms or something else is going on here’. After the needle EMG I asked boldly if he saw any chronic denervation and he said no. ‘Fasciculations means chronic denervation and I don’t see any here’. He also stated that there was some neck arthritis on the X-ray that was taken a month before and he wants to look into that further. Could neck arthritis really be the cause of this? I recently noticed that the calf muscle in my right leg is smaller than the non effected leg which is also the muscle that flexes when I point my toes down (toe walk). I really think that what i’m seeing is atrophy. I also have developed restless legs at night and it is difficult to fall asleep.
Trying to be proactive I have been juicing CNS healthy foods like spinach, blueberries, cilantro, lemon, and kale which I consume a lot everyday which has had no effect on my symptoms. I’m wondering if my symptoms sound consistent with ALS. From my reading i’ve learned that breathing is not affected from the onset which i’ve had. I know that it’s possible but being young with no family history puts the astronomical odds in my favor that it’s not thoracic onset. But I guess anything is possible. I’m here because i’m 7 months into a diagnostic nightmare and I just want a true ALS experts opinion (you guys). I’m not afraid to die. I just want closure at this point. Thank you for reading.
